To not want to live like this and rather be dead though it's breaking my heart

[SickOfPain]

In acute pain, on my knees in my bathroom, nauseated and on the verge of blacking out. There's no dignity like this. It's not always like this - but I don't want to die in an attack like this. I don't want my last minutes or hours to be spent suffering alone like this. I spend so many hours in clinics and with doctors and I'm ok with it but SICK of it. Hugely phobic of needles and invasive procedures and I just lose the plot and start to cry once I leave and get on the tube.

I have plenty of days without pain, but I'm exhausted. I have no life. I make plans and have so many dreams! Nothing happens. Because I can't do anything. In reality, I spend 5 days a week in bed 18 hours out of 24. I could sleep and sleep and sleep.

My mental health has been sliding down. I don't know if the exhaustion is partly mental health I suspect it is. I have been trough local mental health services who offered group counselling which made everything worse. I take antidepressants already. My psychiatrist does not think we should chop and change those meds.

I thought I was managing my feelings but I'm not anymore. I keep fantasizing about going to my local hospital with a letter, saying not to revive me. If I stop my medication for my illness I'll die soon. It would be dignified, more comfortable and less exhausting than attempting to stay alive.

I'm not an economically viable person and the constant worry and suspension of benefits (eg when I moved house, when someone else moved out) is driving me nuts with fear.

If I just could force myself to accept dying, I would not have to be afraid of anything anymore. I can't accept it though - I want to have a good life worth living, but not a shitty life full of pain and fear, but what if that is all that there is for me?

Hey OP

Just wanted to acknowledge your post, I'm a spoonie too (severe PsA, Fibromyalgia & MH issues)

Here with a hand hold and whatever else you need xx

So sorry to hear of your troubles.

It could happen to anyone of us here tomorrow.

I don't have any answers except keep a weather eye on depression, anxiety, and all the rest that might go with your condition. Pain relief can be helped with some anti depressant meds. Check with your doctor.

I hope you will be ok. hugs.

Insulin. It's vital. So if I stop taking injections I think it would be a week at most, I don't know.

I have a new rheumatologist now but everything takes so long.

I have Ehlers Danlos Syndrome. It's taken me years and years of fighting to get a diagnosis and to prove that there really IS something wrong- I completely understand how you can end up feeling useless and wish it was all over add I often go through that myself- but hang on x don't let it beat you xxx

Thank you to all the spoonies who understand where I'm at.

Wando you obviously do not have the teeny tiniest slightest bit of a clue what it is like to live with chronic illness. Do you think the OP enjoys living like this? Do you not think that she is probably already using every bit of energy she has just to keep going?

"Fight for it" my arse. You do not have a bloody clue.

Sympathies - it must be exhausting for you. Chronic illness is no joke at the best of times, and you're really in a dip at the moment. Hang on in there, it will get better and it will get easier.

Have you been seen by the Pain clinic? If not, get a referral fast.

wando I'm sorry but if you think that just changing consultant will always solve that sort of issue then you are at best naive.

OP it's crap, really really crap.
Chronic pain is so elibitating and exhausting, both physically and emotionally.
Do you have anyone in RL that you can rely on, soomeone that cushe do lend a shoulder to cry or could help wth basic DAY to day stuff?

It is horrible when you are feeling constantly ill and in pain. And not right that this is not being addressed properly by the medical professionals in charge of your care. But it is diffiuclt for people to point you in the right direction for help as they don't know enough about the nature of your illness.

Sorry you feel like this
Are you type 1 diabetic as you're on insulin (I'm t1), if you are please don't stop taking you're insulin. Has your endocrinologist tested for other autoimmune conditions?

OP, I'm so very sorry to hear how bad things are for you.

I know how it is to live with chronic pain. I'm encouraged that you do have days without pain. This is good.

But the way you feel is very bad indeed. Please tell your psychiatrist just how bad it is. Tell him/her about the suicidal ideation, the desire to die, your plans of dying. There may indeed be a way to feel better. There are so many psychiatric drugs that you can possibly try.

My previous psych was very, very reluctant to change my unhelpful cocktail of antidepressants/ mood stabilisers/ anti psychotics. After years of unhappiness and tolerating some horrible side effects, I changed all my meds and after some rocky patches, now feel so much better.

Can you talk to your psychiatrist?

You sound like I was a week ago. It's really shit, isn't it? My pain is better this week since going back on marmite. This was the only thing I could think I was doing differently. I drink 2 mugs fulls a day with a heaped tsp in if and I'd stopped for a couple odd weeks. I have ME and chronic pain. I've had 1-2-1 pain counselling and this helped a lot and enabled me to stop the pain killers which were crap because of side effects. Maybe try marmite? And diet helps a lot as well. Low sugar is a biggie.

I'm so sorry. Sending good vibes and hugs. Do you have a good support system around you? I hope you're able to find a specialist who can really help you. If you have a good support system, maybe they can help fight for you to see someone better, because it's understandable you may not have the energy to do it all on your own.

Hope today is a better day for you.

wando you clearly have no clue what it's like living with a chronic illness. It took me 8 years from the age of 13 and a huge amount of shitty consultants until the last, to diagnose me with endometriosis. It's not that simple

It worries me that people can go for so long without a diagnosis and pain relief. I get where you;r coming from, that you don't want to spend your last hours in agony.

I've got several health problems, been in mild but chronic pain my whole life - and recently got a diagnosis. The relief was so overwhelming, I cried. Its right there on paper, my test results. Its not just in my fucking head any more. I have meds now and they've stopped fobbing me off.

Please, don't quit pushing them to do tests to get a definitive diagnosis.

Mummy thats fascinating about the marmite, I heard they were investigating the benefits of really upping salt intake for some chronic illnesses to see if it helps, I wonder if thats why the Marmite is helping?

Wando I can't offer advice on the pain but I do know it can massively, massively affect MH. I would honestly show your psychiatrist what you've wrote here (the MH bit)

I'm sorry your going through this

I'm sorry you are in so much pain OP, I don't have any experience with chronic pain but it sounds awful. The only thing I can think of is that I watched a programme the other month about a doctor who was trying to see if he could treat people without medication and it featured a lady with depression and a lady with chronic pain, both were helped with alternative therapies (cold water swimming for depression and chi gong (?) for chronic pain).

Obviously not saying either of these definitely work but maybe worth looking into and taking comfort that there might be something you can do?

The programme was called the Doctor Who Gave Up Drugs and it might be on YouTube?
www.bbc.co.uk/programmes/b07w52tp

Regardless I hope you find something that can help soon, I can't imagine what it must be like for you. Is there any family/friends you can talk to? x

I'm so very sorry you are going through this. I got very ill about 5 years ago, and it was AGES before any action was taken. I had to fight every step of the way, at the time when I had the least to give. It's awful, humiliating, scary and, to be honest, inhumane. But I was lucky - I did get through it, I did get a diagnosis in the end, and surgery, and I did get better. There can be light at the end of the tunnel, remember that.

In the meantime, we are here to hold your hands. Many of us have some inkling of how you feel. We know how long a road it can feel, we know how tired you are and we are here, virtually, in a circle around you, cheering you on.

Oh, and please ignore the ridiculous suggestions that will no doubt pour in from all sides that all you need is a tin foil hat, some crystals, and to change your diet to a kale smoothie. You are sick. You need help from qualified professionals. You will get there eventually.

Hello SickOfPain,

We are really sorry to hear you are feeling so very low.

We hope you don't mind, but when these threads are flagged up to us we usually add a link to our Mental Health resources. You can also go to the Samaritans website, or email them on [email protected]. Support from other Mumsnetters is great and we really hope you will be able to take some comfort from your fellow posters, but as other MNers will tell you, it's really a good idea to seek real life help and support as well.

We also like to remind everyone that, although we're awed daily by the astonishing support our members give each other through life's trickier twists and turns, we'd always caution anyone never to give more of themselves to another poster, emotionally or financially, than they can afford to spare.

We are going to move this thread to the Mental Health section shortly.

You seem to be getting some good support from other posters on this thread. We really do hope that today is a better day for you.

Have a look at a book relating to gut health. I'm not sure that it will fix everything of course but will definitely help with depression and auto immune - and give you something to focus on. Good luck x

I can totally empathise, if I'm honest I came to terms with being ok about dying a few years back, but I have a terminal illness, so I know that it could happen whenever.

Are you on any anti emetics for the sickness? I was reading a thread and all of a sudden felt nauseated for no reason which is normal for me. So I take my medication and lie down till it passes.

Like you I sleep insane amounts every week, there's so much I would love to do, but energy wise I'm all out. I suffer from chronic pain, plus other conditions, you never know how it's going to be one day to the next.

I saw a psych who said that it's understandable I feel the way I do, as there's no real timeline for when things will be really bad. As in when the end is nigh.

I'm pretty much alone, most of the time, sleeping usually. My organ function is poor so it impacts the rest of my body.

I don't think they'd allow you to DNR given your psychiatric state, even though your suffering is quite severe.

I do think it's it's cruel of nature, to have us in these situations.

Do you get Direct Payments, do you have any diagnosis' at all?