To be so tired that I just want to die?

[Babysharkdoodoodoodo]

I'm not going to do anything stupid but I haven't slept properly in just over 5 years now and I'm just so so tired.
I got diagnosed with breast cancer 2 days after I got married in October 2012 and had to have the full slash/poison/burn treatment and as it was hormonal, had to go on tamoxifen but that caused bladder issues and after a year put on aromasin. All of which threw me into instant menopause.
Oncologist tried me on several drugs for the flushes from hell, Latest being gabapentin which at least has stopped the anxiety attacks that accompanied the flushes. I've been in it for the last few years and the flushes still haven't stopped. I'm on aromasin for the next 4 years and I don't think I can take much more. So much so that I stopped taking it for 2 months this summer but I went back in it as nothing changed.

I haven't slept more than an hour and half since I finished chemo in June 2013 and I'm so frigging exhausted. I'm on other drugs for side effects as well plus the aromasin has caused me to have osteoporosis in my spine and pelvis, so I get pain if I walk or stand too much. Then I got diagnosed with type 2 diabetes last November as well :/

God I sound like a whiner but DH is snoring away upstairs whilst I just sat and cried on the side of the bed whilst turning into a sweaty mess. I can't even have hrt or take anything like black cohosh because of the cancer being hormone receptive.

The final straw is not wanting sex. I can't even stand it when DH touches me. I love him so much that I have to pretend every few months but it hurts, even when I use a lubricant
(Sorry if tmi) and I can't get a female gp. I just can't face seeing a male gp and blurting out about wanting sex. Or is that stupid?
I don't even feel a single twinge of anything down there anymore and I'm just so bloody sad. I'm actually crying about it now and I'm so tired as well but as soon as I lie down I just feel like my head is going to explode from heat. I've tried gel pillows that get sweaty and warm after 3 minutes. I only wear natural fibres. I've given up alcohol and only have a couple of coffees as opposed to my old 8-10 a day. I don't smoke anymore. I can't have sugar anymore. I basically have nothing to bring me joy anymore. Maybe an exaggeration but no sex, chocolate or sleep is making me as miserable as fuck.

My surgeon and the oncologist just basically shrugged and said I had to get through it like all the other women.

Ok so I'm lucky to be alive but the mental cost is making me doubt that now. And I'm pig sick of being told to pull myself together.

I'm so sorry OP. I have no real experience of this exact thig, but it's heartbreaking to read. The only advice I have is that there is still joy to be found in life. Where is going to depend on what you like, but when I was in bed for a long time I found huge pleasure in books. I don't know if that's your thing, but your thing is out there.

I too am sorry Babyshark, it sounds as though you have more than your fair share. How dare anyone tell you to pull yourself together, they ought to try walking a mile in your shoes.

It's my belief that things will improve.

Bless you.

xxxxxx

I am very sorry to read this it sucks that you have to go through this. I don't have any experience of what you've written about but I'm sure others will have and will post shortly! I would say though, you should be able to get a female GP? Maybe you could change doctors surgery? Good luck xx

I'm sorry ,also a breast cancer fighter , had op etc ,tamoxifen is evil..I chose to stop taking it after 3 years diagnosis ,my choice the symptoms the weight gain were making my life miserable , good luck op x

So sorry you’re going through such a tough time. I have no solutions for the insomnia, being sat here wide awake at 3am as usual, but just wanted to send hugs.

Have you thought of trying your local sexual health clinic for the sex issue? I realise it seems a bit of a contradiction in terms, but I was referred to one for long term thrush which was causing painful sex and libido problems. I believe you can also self refer. I ended up seeing a wonderful female doctor who talked me though everything and diagnosed vaginismus, for which I then received hospital treatment.

I hope the New Year brings better things for you.

So sorry, OP. Have you got a spare room? Would an air-con in just that room help you to get some sleep? Or is the heat internal so would an air-con not make a difference?

Or sleeping tablets? Not forever but just to get you some damn sleep!

You don’t sound like a whiner, you sound like an incredibly strong and brave woman in very difficult circumstances.

I’m guessing you’ve tried the obvious things like sleeping tablets and melatonin. Could something more relaxation based like mindfulness, meditation, hypnosis or tai chi? Some cancer charities offer them for free.

Is part of the problem that it’s difficult for you to get out and about so you feel isolated? If so something like a scooter or a volunteer sourced from a charity be any help?

If you felt able to get out and develop interests and hobbies outside your home it might give you an opportunity to rediscover some of that joy.

And you don’t need to pull yourself together. You are already incredibly together.

That’s appalling OP I don’t have any advise unfortunately but just want to lend a hand hold.

Op, I cannot suggest anything but just wanted to say that it is crap the oncologists are not paying attention to how you feel. It is just not about your body is about ensuring your emotional health as well. I hope some more sympathetic doctors came into the scene soon, but in the meantime, if having a good cry helps to take the frustration out so be it, some days are to fight, some to retreat, take stock, a rest. The next day will take care of itself.

Aw sounds totally fucking horrendous. Sending you big virtual hugs.

@TheBeastInMsRooneysRoom Reading is my be of the things that is getting me through life. Always has, since I was little. DH can't understand it as I always have my kindle The £7.99 a month for Unlimited is bloody amazing.

@puddled2 I'm sort to hear you went through tamoxifen hell as well. I haven't been able to lose any weight since I started on the never ending drug cycle and I'm sure they contributed to the diabetes.

@ShannonRockallMalin I might have to look into the clinic. It's getting to fit appointments in with work that's always an issue especially as I started a new job in October, but I start a new shift pattern in February (4x 12 hours urgh) so I'll get time on my 4 rest days to get things done.

And I'm still bloody awake. I just tried since my first post but it's actually hard work to lie there and try not to disturb DH, so I've come down again to have a cup of tea. I think it's harder when I'm off for a few days as work is so draining that it's easier. Plus I have the joy of the stepkids coming tomorrow so that's making me stress out. Then my youngest is coming back from his dads on Saturday and my eldest and his gf are coming for the New Year and my parents on New Year's Day for tea after I've done a 6pm til 2am shift. I'm actually having to book a hotel for that as I don't drive so I can't get home with no public transport around.

I might actually get a bit of sleep in January and February as I'm training away so living out for a week at a time, which is going to be an adventure as I'm doing the SpareRoom thing and I haven't lived alone for over 20 years. So no DH snoring and making annoying sleep noises next to me.

My head is so heavy right now but brain is still whirring and I'm flushing in 20 minute cycles. I sound like a washing machine. Lol.

@Augusta2012 I've tried sleeping tablets but they make me feel crappy. I do get out as I work full time. Still have 14 years to retirement as I can't afford to stop, plus I bloody love my new job.

I've tried mindfulness but I can't empty my head. The heat and sweat is too distracting.

@Augusta2012 I've tried sleeping tablets but they make me feel crappy. I do get out as I work full time. Still have 14 years to retirement as I can't afford to stop, plus I bloody love my new job.

I've tried mindfulness but I can't empty my head. The heat and sweat is too distracting.

I know the answer is never to chuck matieral type things at this.as your mental health feels so shit.but.is there anything now outside of your mind and body that could help.something that could bring you joy.would a dog or pet help those nights.or time.or getting out in the open air.
do you love to read or write.could this be something to keep those dark and upsetting nights a bit eaiser.
do you think some therapy would work.even hypnosis or the needles(cant remember the name) ooh acupuncture there it is!
at some doctors now there are lots moe outreach servive doing alternative therapies.
or talking or cbt to come to terms with the shit that been laid at ur feet.
it sound so painful in every way op an I just want to scoop you up in big hug.
its never to late
your hear that shows how amazing you are.to adap to what you have would give anyone the tears.but your trying your best and I think your an inspiration reall.y.
could you get in touch with a dietitian or do some web research to find and experiment with some coking for some joyul recipes again.
just anything anything you can think of that would ease this.if you cant escape from the health side of thigns how can we ease that with the other bit in ur life to outweight the shit to fun scales.

Have you been checked to make sure you don't have fibromyalgia OP?

I recently got diagnosed at my local hospital and they think I've had it for quite a while(I was and still am undergoing tests for M.E. .that's how the fibromyalgia diagnosis came around)I get the ridiculous hot flushes and I can't sleep properly(despite sleeping tablets)am in constant pain and get migraines and bad headaches.

But now we know what's causing those symptoms my hospital and Dr's have stepped things up a bit and are trying me out on different meds and with different specialists.

With the hot flushes at night I find a fan on me helps to cool me down,that and wearing a lose cotton nightie and having a cotton sheet on me.

I hope you find some help and start feeling better soon

Have you tried Meltonin for the sleeping problem? My DS has to take this. It’s naturally produced by the body and you get it on prescription. It turns my screaming banshee of a child into a sleeping angel within about 49 mins (he’s a teenager).

I would try Oestrogen for the low sex drive and pain during intercourse.

Do you have a MacMillan nurse or a clinical nurse specialist?
Is there a complementary therapy service or charity in or near your hospital?
They usually offer counselling, aromatherapy among other things.
I used to volunteer in an organisation like that when I was well. Even a gentle foot massage can make a real difference.

Sleeping apart from DH might help, can you get a decent sofa bed and make that your bed?
Do you have a decent vibrator? I know your sex drive is through the floor but if you invest in a good vibrator that doesn't require much effort on your part you might be able to click back into being orgasmic which might help your sex drive a bit.

I've decided to definitely get to see a gp in the new year to sort this out. I can't go on like this or I'll throw a hissy fit.
I think it's bad right now as I haven't been able to take my head out of myself iyswim? I've been doing a part time Masters that I've deferred for a year, due to new job so I haven't been able to lose myself in research like I have the last 2 years. I've got another 2 units and a dissertation to go, so I might start researching early just to engage my brain on something else.

I had a look at the fibromyalgia symptoms and tbh I don't have any of the other symptoms so I'm probably ok there. But I will ask the gp if I can have an mot. I need to get my bloods done anyway for a blood sugar test that I've been putting off, because of Christmas.

I've nearly been up for 24 hours now and still overheating. Ugh! It gets worse the more tired I am as well.

Hey OP I suffer from insomnia (having a wee bout now!) and I use a meditation app called Insight Timer - it’s free and has loads of guided meditations on it, of different lengths, for all sorts of things including sleep. That way you don’t have to empty your mind, you focus it, the meditations help you to relax, breathe deeply and get to sleep. I’ve never done yoga etc but I found it really helpful (will be doing a meditation shortly). You need to have a little bit of a dig around with the meditations to find ones you like and respond to as some voices are annoying, some are too hippy dippy etc but it’s really helped me (mine is anxiety and now also pregnancy based insomnia so different but maybe worth a try?) I was kind of slightly hooked on mild sleeping pills (OTC in states) and I had to stop taking them with pregnancy and I’ve found this really helpful.

I also try moving rooms (we have a spare room which is my insomnia room) which I find helpful and def being alone rather than beside partner. I try to go to sleep with partner then when I wake up and know I can’t get back I go straight to the other room. Is that an option for you if you have a spare room? Make it a little haven for yourself? Once I’ve had a few hours I sometimes go back through to DP or get in for a little cuddle in the morning so it doesn’t feel like we live separate lives!

Sending you and sleep

Sending you hugs. You're dealing with a tough load. Hope you get more help and things get better soon. X x x x

Babyshark my mam is on that Tamoxifen and also went to hell and back with menopause and her sleep

What sleeping tablets did you try? (I'm not a doctor this is just going off my mams experience) she couldn't cope with the Z ones (zopiclone, zopidem, zopisomethingelse) although they are all slightly different so if you've only tried one another may work differently.

She did get on with a stronger benzodiazepine who's name escapes me, they are supposed to be short term use only but under the circumstances she was allowed them longer

Amitripiline, mirtazapine and trazodone are used as antidepressants and can aid sleep and there is some antihistamines (I take phenergen) that has minimal side effects.

I don't know which if any would interact with your current medication or but if your struggling so much it might be worth another try. I've had normal insomnia and it's soul destroying, I really feel for you.

Sleep deprivation is a well-known form of torture so I'm not surprised you're a bit of a mess!
Sorry to hear it though.

Do you sleep in a different room from your DH? If not, then this might help - you can do things in your own time and space, read etc., and not have the extra heat, movement and noise that comes from your DH.

There are some essential oils that could maybe help, but not lavender because it is said to have effects on hormones so you should steer clear of it - but vervain(verbena) in a burner might help.
I don't think you should take it orally though - I've been looking for info on whether it would exacerbate your hormone receptors and it does have some activity, so best avoided internally.
Other essential oils that would help are German chamomile (a deep blue oil) and sandalwood. None of these would have adverse effects on your hormone receptors but may help.