Chronic illness, can't take any more

(15 Posts)
brokenbymedicalstuff Wed 10-Feb-21 16:23:58

Why won't anyone acknowledge that sometimes all the chronic health management and coping strategies and resources are not enough to achieve an acceptable quality of life? Why is that not talked about? Why am I not allowed support with that? Blamed and given another lecture about a CBT strategy they just acknowledged themselves I already use as successfully as possible?

Multiple chronic illnesses, one life limiting but I'm not actively dying and we don't know when it will snuff my life out so "it's ok" and I'm supposed to be fine walking around knowing the horrible way my life will prematurely end.

Severe trauma, from complex sources, exacerbated by all the medical interventions I've been through over the last decade. Any medical related anything is horrendous, even just being touched.

The medical situation has destroyed any chance of my recovering from the trauma, and now the original traumas and medical traumas are entwined and unsafe to attempt active therapy on. They can't be unravelled and my on going health means I'm constantly acquiring new trauma and being actively traumatised.

Have worked my arse off with all the relevant psychological therapies for both chronic illness and trauma (and nope, EMDR was not the magic cure for my trauma, I failed there too, so please don't suggest it is going to transform my life - I've already had that disappointment).

I use the strategies, I am creative with my pain and symptom management, I know how to use pacing, I have an array of selfcare strategies that I use everyday, I know everything I am supposed to do to manage trauma symptoms and I do, I use CBT techniques, I ask and accept and engage with help, I pretend to be positive and don't drag people down (because nobody can cope with the merest hint at how awful my life really is), I adapt things I can't do and accept I can't do many many other things, I have strategies for distress and grief and blah blah blah.

Nothing gets better. The distress is still every day. The pain is still every day. The trauma is growing with every medical letter, appointment, intervention. I have my strategies and I quietly endure so that no resources are wasted on my pain and distress. It is not humanly possible to take more responsibility for my own self and my own emotions than I do. I don't expect MH services to rescue me; I know they can't.

I have repeatedly downgraded my hopes and dreams, and tried to find replacement hobbies for activities I cherished and lost due to my health. I listen quietly when HCPs tell me to "just find something new" each time I lose part of myself and something I cared about as if it was nothing. I nod when they tell me they can't help.

I know things could be worse. Every time I think I must have been dished out a lifetime's worth of awfulness, it gets worse. Knowing how much worse my life can get is not comforting. Knowing my ability to endure suffering counts for nothing is not comforting.

I have lost my hopes, my dreams, my sanity, my health, my bodily integrity, my independence, my hobbies, my privacy, my career, my chance to have a relationship, my chance to be a mum.

I didn't want a lot from life in the first place - I didn't start off with unrealistic hopes and dreams - I accepted all the losses, and I kept fighting so hard to still be here and make the best of things. I've tried to be grateful and positive and hopeful but I just feel pain.

Yet every day is just a battle to endure pain and trauma symptoms, knowing at the end of all this I am going to die a traumatic death alone without ever getting to be a mum. If things had been different I think I could have been a good mum.

I've just had another letter about more medical hoops they want me to jump through like it's nothing but it's not nothing to me. It's unbearable and unmanageable, but if I can't jump through these hoops life will get even worse for me. I'm already maxed out, I don't have capacity to "just" push myself "a bit" harder for the latest demand.

I've had enough and I just want to be allowed a humane way out because all the psychological support and all my work is not enough for this to be a bearable existence. I am alone, I am suffering and it is never going to get better.

Not expecting replies. I know there is nothing anyone can say or do. But thank you if you managed to read any of that.

OP’s posts: |
user1497873278 Wed 10-Feb-21 16:52:53

I honestly can’t imagine how bad you are feeling because even though I have been suffering pain that has made me feel suicidal many times, I have been told I should get better. This time has been hell I have lost everything like you are saying, even the ability to join in with others without faking it because of the level of pain, and honestly the things people have said to me, are unbelievable, I have felt jealous, angry? and just about every other emotion. I have cried at not being able to dress myself or use the toilet on my own, I understand your feeling of total desperation, I don’t think anyone I know understands in any way how could they, the worst they have dealt with are minor problems. But when they look at me I’m stunned that they can’t see how much I’m suffering, emotionally and physically, I can’t sleep because of the pain even with meds, I really get everything you are saying. I’m so sad to think of what you are going through, it really is a desperate feeling I know that, sending my love and prayers to you, wish I had a magic wand

OhTinnitus Wed 10-Feb-21 17:05:49

I understand OP. It's very difficult to go through. flowers
After many years of my health deteriorating, I became very depressed. But in recent years, I have found meditation very helpful. It took a long time to feel the benefits as severe pain was a real hindrance to connecting to it but now that I have, it really helps with my frame of mind.

User45643 Wed 10-Feb-21 19:26:23

God I'm sorry op, the day to day struggle and the grief of not being a mum. I agree there is a lack of humanisation and too much medicalisation. Not sure what the answer is either as I can't change the system. I am currently attending and setting up some support groups for people with my condition. Also on low dose Anti depressant.

ReclaimingTheKaren Wed 10-Feb-21 19:36:57

OP I hear you, am with you. There isn't the support or understanding there needs to be, absolutely there isn't. I don't have the answers, but please at least know you not alone.

Alternista Wed 10-Feb-21 19:41:11

I’m just posting to say Ive heard you. I’m so sorry. You have been dealt a shitty shitty hand and anyone who doesn’t get that is an idiot.

PensionsYes Wed 10-Feb-21 19:44:09

I hear so much frustration. You are not alone.

MH care in this country is appalling for so many people. I’m sorry it’s so bloody hard.

Have you got any rl support? It sounds like you’re carrying so much on your own. (And you’re clearly aceing all the coping strategies. Do ‘they’ know that?

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TaraR2020 Wed 10-Feb-21 23:59:51

I also want you to know I've heard you, and I believe you about the amount of pain you're in and how much you're suffering.

Im so sorry you've had to give up your hopes and dreams. And I understand the frustration when someone suggests another therapy that you've either already tried or already implement.

I wish I could offer a solution but all I can do is say that I'm thinking of you flowers flowers flowers

PensionsYes Thu 11-Feb-21 08:14:12

Just wondering how you are OP. I do hope you got a bit of sleep @brokenbymedicalstuff

Namechange600 Thu 11-Feb-21 12:20:13

@brokenbymedicalstuff
So sorry - I hear you.
People have no idea what it means to live with multiple and overlapping chronic health conditions causing a multitude of symptoms - severe pain being right up there at the top.
Even well meaning people try to help sometimes but make things worse (eg yoga suggestions etc - even from family members!!)
I had my symptoms minimised by family and medical experts for over two decades.... now i am left gathering medical conditions like badges..(family just do not get this - it’s like a really shit jigsaw I’m figuring out). meanwhile my mental health has taken a huge battering though years of pain and being ignored. I have had to fight every step to get better treatment.
It is hard.
I wish you all the best and feel free to DM me if you want to vent xxx

SpudsandGravy Thu 11-Feb-21 14:11:57

I'm so sorry to read this, OP thanks

BigGreen Thu 11-Feb-21 14:25:34

I just wanted to send you a handhold. I hear you and I believe you and I am just so fucking sorry that you're suffering in this way. It's just so completely unfair.

Primitivo1 Thu 11-Feb-21 14:59:38

I also want to say I am so, so sorry that you are in such a bleak place (physically and mentally). Overlapping chronic illnesses here and some other issues and I have felt how you felt. Mindfulness has made a difference to me (Jon Kabat Zinn's work with people suffering chronic illness) but there is a point where you feel like you just can't do anymore, I know. I hope you can find some way of bearing it. I do not know what the answer is, in this country at this time.

BigGreen Fri 12-Feb-21 09:26:25

How are you feeling today @brokenbymedicalstuff? flowers

Redannie118 Fri 12-Feb-21 19:43:02

I hear you. I could have written this word for word. I was reading a article the other day about medical anxiety, and it rang so true for me. The utter dread when an NHS letter drops through the letterbox. Compliling the long list of your symptoms YET AGAIN because you know the doctor you see will not have looked at your medical records or have a clue about your condition. The dread before tests or proceedures. The dread waiting for results. Having students gawp at you like a science project because you are an unusual case. The hoplessness and frustration from years and years of confusing diagnosis,lack of consistancy in care and just been passed from pillar to post. Its dehumanising and frankly fucking awful. Im sorry op, I wish I had something positive to say or for you to try. I dont. But i do feel your pain.

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