Page 2 | To feel I have nothing else to give now....feel terribly guilty as a result?

waveajay · 01/06/2021 06:40

I know exactly how you feel. I don't have a child with a disability but I had my work cut out during lockdown. During the past few months, I've been unable to do things too. I don't pretend to know what it's like to have a child with a disability but I know what it's like to give and give and give.

My twins were 2 during lockdown and I didn't have a break.

I wouldn't feel guilty and I wouldn't mention it to my manager unless they bought it up.

Do not feel guilty. The energy has to come from somewhere. And when school was closed, it had to come from you.

Let yourself off the hook. Maybe go and see your GP for time off if you're stressed or feel you need the time.

Best of luck to you, seriously. I wish I could make you a really big hot cup of tea.

PaulGallico · 01/06/2021 09:30

I know how you feel. My DS is a young adult with complex needs. Not as complex as your son - more behavioural. I also work full time. During lockdown my employer did not really understand - generally people don't understand. As a result I was/am exhausted. I also think, like me you are at a point of thinking what next for yor son. That in itself is really hard and draining on your energy. I would see the GP and get yourself signed off work for 2-3 weeks. You need some rest.

Original poster

Livingtothefull · 01/06/2021 13:38

Thank you all so much. I will try to do what is necessary to prioritise my well being because I know I risk being burnt out, the warning signs are there. I am lucky in that my workplace/manager is supportive but I know I am not alone and that many people are struggling at the moment - so I really feel for all of you who are going through your own challenges.

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Original poster

Livingtothefull · 03/06/2021 23:30

I wish I could burn out...then I wouldn't need to deal with all this any more. But I never do. I seem to be a strong person and I wish I wasn't, then everyone would have to look elsewhere to deal with all of this.

DS has a stomach upset and severe diarrhoea. I don't want to go into what is involved with cleaning up an incontinent immobile adult at 6am in the morning - not just him but his clothes and bedding. Then doing it all over again half an hour later. Then again this evening.

DS taken ill this evening, DH tries to imply it is my fault and snaps at me (it is the stress coming out and he did apologise after - he needs a punching block after spending his days working and being nice to everyone, unfortunately I am it - not literally needless to say).

Keeping in touch with work, I realised I have missed another deadline. Panic....another failing on my part. Nothing to do but try to sort it out first thing tomorrow, there is nobody else to do it and it is time sensitive.

I just don't want tomorrow to happen as tomorrow means I have to deal with all of this all over again. So I am sitting here long past bedtime, trying to avoid tomorrow by prolonging today. It doesn't work though. I am just so inadequate, inferior, on a step lower than everyone else.

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AmberIsACertainty · 04/06/2021 01:37

Keeping in touch with work, I realised I have missed another deadline. Panic....another failing on my part. Nothing to do but try to sort it out first thing tomorrow, there is nobody else to do it and it is time sensitive.

Sweetheart, no. You're off sick. End of. If you dropped down dead from a seizure someone else wouldhave to deal with this. Which means you don't have to deal with this now. You're off sick which means this is someone else's problem. Let them solve it.

Frbct · 04/06/2021 01:48

You're not inadequate or inferior. You are dealing with so much. You're definitely not a step lower.

AmberIsACertainty · 04/06/2021 01:52

I am just so inadequate, inferior, on a step lower than everyone else.

You're really not. It's where others have put you. But they have no right to do that. Your life is as valuable as anyone else's.

It's not only you who needs a plan going forward, it's your husband too. He needs to stop using you as his stress relief valve. He needs another way to deal with his stress that doesn't involve snapping unfairly at you.

You don't have to tolerate that. You shouldn't tolerate that. The fact he apologizes after doesn't make it ok. He doesn't need to do it, he does it because it's what's easiest for him. Going forward, he'll have to take the more difficult option of finding another way to cope.

I recommend you stick with your own counseling for support at the moment. But also perhaps think about having family counseling with your husband, either after your counseling ends or alongside it if the counsellors feel that ok. So you and him can find a way forward as a family, but at the same time you can safeguard your own health with solo counseling, to ensure you're not railroaded into an unsuitable situation by your husband. Not because he's necessarily horrible (you haven't provided enough information for me to have an opinion on that) but because you're struggling to put yourself equal to husband/son/employer/everyone else in the universe, and could use some help with that. Which is what you should be doing because you are equal, you're not supposed to be bottom of the pile.

Ambo21 · 04/06/2021 01:59

Lassie you need to let go of everybody elses problems. You need to look after you and your immediate loved ones. Your son and your husband, but MOST of all you.
You need to rest as much as possible however difficult that is to achieve. You should be off work, they will cope... let that be their problem.
No-one is irreplaceable at work... no-one. And your health is much more important than any job. And right now you are running on empty and it sounds like you have been for some time.
You NEED to say no to people.. how they react is their problem.. not one of them walk in your shoes.. not one of then have a clue what your day to day life is like.. and very few could cope the way you have been doing.
And to an extend that is the problem.. you appear to be coping, sailing through and you do it so well, everyone thinks its real, and everyone admires you and you are wonderful....
And now you cant stop being wonderful cos that is what people expect and you cant let them down cos thats not what you do...
And so the circle of self destruction is complete..
You look after you.
The world will roll on.
We really ARE very small cogs...
Take care of yourself..slow down...prioritise YOUR priorities.. take deep breaths and be gentle with you.
You can get through this, but please love you more.
Take care...x

Original poster

Livingtothefull · 04/06/2021 19:13

Thank you all so much for your supportive and thoughtful messages. It has been a tough day, every bit as bad as expected but it is (mostly) over. And it is the weekend although little respite for us.

I will try to prioritise myself....so much easier said than done especially when everyone seems to want a piece of me, but I will try.

Thank you again, it means a lot.

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Original poster

Livingtothefull · 12/07/2021 22:54

I really don't want another tomorrow, there have already been too many of them. My reality belies the title of this thread, there is always more that has to be given and I am the one called upon to give it whether I want to or not.

My poor dear DS is diagnosed with osteoporosis. Yes....that is a diagnosis that usually affects elderly people but my 20-something DS, as a result of his disability, has it. I am so sick of what my dear darling DS has to suffer; why should he go through all of this? I want to compensate him for this somehow but I don't know how.

And despite my protestations 'I can't go on, it is just too much for me to be expected to cope with, why should I be expected to deal with all of this?' there is no putting this trouble down. That is what my life largely is: stand there in the agony, inhale it deeply, don't fight it because it can't be compromised with. Then get on and do what has to be done, and enjoy loving my DS.

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Original poster

Livingtothefull · 13/07/2021 13:48

Well tomorrow is today now, at work and more emails marked 'Important and Urgent' (yes that is the title of some of them) demanding responses. I am in a blur, can't describe how this makes me feel....it is as though everyone wants a piece of me. I am very good at doing the diplomatic, supportive and helpful things to respond with though.

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Polkadots2021 · 13/07/2021 14:49

@Livingtothefull

This is my 3rd attempt at posting...am trying to put it into words.

I have been working from home since lockdown started last year....the first few months I had disabled DS at home whilst working which was hugely stressful. Fortunately he is at his special college now.

I think I am good at my job and usually the feedback I get is good. But I am really struggling right now. I am finding the workload really difficult to manage, worked 2 hours late trying (failing) to get on top of it.

Today I sat down to work and I couldn't do anything. Literally, just couldn't. I felt I couldn't cope with the emails and couldn't contemplate responding to them. I felt numb and nauseous at the thought of them, at the thought of how much there is to do - felt that 'there is no way of getting on top of the work so why even bother trying?' I left things hanging that I really should have dealt with.

I feel so guilty and such a fraud - taking my salary & not doing a proper job. My manager has no idea, she thinks I am doing a good job and coping well.

I can't talk to my DH about how I am feeling, he has a stressful job of his own and does if anything more than his share of caring for DS. (DS has profound physical and learning disabilities so we are never 'off duty' even when not working - no down time for us. We are worried about/trying to plan his future too).

Absolutely no way I can fail to cope as they both need me - I am not depressed I don't think just stressed out of my mind. I have a chronic health condition (epilepsy) and recently have been getting seizures in the night, have posted about them elsewhere.

I can't talk to my family as some of them are very vulnerable themselves. We have regular catchups during lockdown when we all tell each other that everything is fine and we are coping well.

So I don't know where to turn and how to make things better, the things I am facing seem so colossal. I have booked a session with a counsellor tomorrow so will see if that is helpful - but I don't think I need 'fixing' just the things around me and they can't be fixed.

Is there anything else I could do to improve things? I am so sorry to complain on here, I do want to be positive and stay well but I know how fragile mental health can be.

I'm a PT so can only focus on physiological things that have direct biological outcomes. Other posters will have other specialties. What I can offer info wise:

you have burnout without a shadow of a doubt. It's a simple biological trajectory where stress just adds up to the point that your adrenal glands get overloaded and your body is too full of stress hormones so your sympathetic nervous system starts trying to shut down non essential needs for energy. Focus and short term memory are often the first to go, hence your exoe at the computer, alongside overwhelm, simply a result of maxed out stress hormone levels.

You need to engage daily and immediately in anything you can to rebalance things, so that means stuff like:

anything you can do to maximize sleep hygiene such as earlier bedtimes, better sleep environment, longer hours of sleep, use of audiobook, white noise, sleep supplements, whatever relaxes you;
daily stretching when you wake and before bed;
as little caffeine and alcohol as possible;
strong multivit in mornings, strong multivit in evenings;
decent probiotic every day, omega oils
cut out food you might be intolerant to
cut out any sources of stress you are capable of cutting out (hard I know)
exercise in any form any time you can no matter how small
share the load whenever possible eg telling your boss you need a couple of days to regroup even if it's unpaid leave.
something every single evening no matter how small for you to look forward to that represents self care
healthiest diet possible (I don't mean calorie restriction I mean lovely healthy food and lots of it even if it's basic like lots of raw veg and hummus Dip as snacks, healthy bread, with lots of nice olive oil, healthy meat, fish, rice, whatever- basically try to avoid takeout and crap food)
new hobby no matter how small where you can switch off e.g., book on Kindle to escape into for a small amount of time each day
get outside anytime you can

These strategies directly deal with your burnout from a biological standpoint. Obviously there are other approaches that stress psychology, etc
, Which are useful too. But if you can follow these points, biologically you'll recover faster from burnout and feel definitely improved, less overwhelmed, more able to cope, your immunity will be better, you'll feel less run down, with less brain fog, etc.

Last point-you sound like a lovely lady doing amazing in a really tiring, easily overwhelming situation.

Polkadots2021 · 13/07/2021 14:52

*sorry that should say strong multimineral in evenings, also an iron during the day if you might have low iron

Original poster

Livingtothefull · 13/07/2021 19:40

Thank you so much @Polkadots2021. That is so so helpful; I know that in theory it is important that I take care of myself but I haven't had it broken down like that, what I need to do in practice.

I need to actively take care of myself and not use my situation to turn my anger in on myself. There is an element of wanting to punish myself which is really pernicious; as if punishing myself is something I have control over, the only place the anger can legitimately go.

I am trying to exercise and eat healthily but will try to follow your advice and uphold my physical & mental health in a much more coherent way.

I haven't got much leeway to drop stressful situations but I will need to do what I can. There are some wider issues with other vulnerable family family members (ie other than DS) and I am feeling guilty that I am not doing more, others are picking up much of the stress there. But I think I just can't take this on too however dreadful I feel about it.

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MiamiBeach104 · 13/07/2021 21:34

@Livingtothefull I was in a similar situation work wise. Different circumstances in personal life but equally challenging. I decided just to push through it. Ended up having to take few days off due to burnout, my health suffered and nobody even said thanks at work as expected

I would definitely suggest talking to your manager. The situation you are in now is not going to change soon and you are just going to cause yourself more harm by not doing anything about it.

Original poster

Livingtothefull · 14/07/2021 20:57

Thank you @MiamiBeach104 I am sorry you want through such a hard time yourself and yes it can be really thankless, that can come as a shock. I do hope you are in a better place now.

I want to do my job and I am really good at it; I feel I would be wasted by not working.

But on the other hand I am worried I am being disloyal to DS by focusing on something outside him really. I want to be wholehearted in what I do and know what I stand for. Feeling inadequate at my very heart - as though I have made a wrong turning at the very start - is at the bottom of all of this. Am I doing OK or am I letting myself & everyone around me down?

I do want to talk to my manager and let him know I am struggling; but I also need to articulate what it is I am asking for and whether the adjustments I need are temporary or otherwise.

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MiamiBeach104 · 15/07/2021 06:40

What I also did last year was seeing therapist. What he helped me with was being able to look into the situation from a different angle. I noticed with people we get so involved with issues/problems our lives in general that it becomes impossible to see the solution or be in a position to implement it. (Other than that I don't think I gained much from him. I could claim it through work insurance but I think Mumsnet can be just as good )

I don't think you should feel guilty about being disloyal to DS. You are his mum but you are still you at the end of the day.

I think at the end of the day you should do whatever makes you feel more happy. Ultimately that's the most important thing that matters

GlutenFreeGingerCake · 15/07/2021 07:24

Any chance of reducing your working hours/workload? That's what I would ask for from the manager, part time hours. Secondly get every bit of time from carers you can and look at ways to reduce your workload at home. Maybe a cleaner, laundry service, good quality ready meals sometimes whatever you can afford.
Mental and physical health are so closely linked and I do think if you keep pushing yourself you may well become physically ill. That's why I suggested a lot of more practical things to reduce your workload and give you more time to rest, even though it seems to be a mental problem.

OurChristmasMiracle · 15/07/2021 07:31

Hello @Livingtothefull

I am also epileptic and if your normally stable (like me) and have recently started having seizures this is your body screaming at you to take a break.

If your manager is normally supportive I would speak to her and say that you are really struggling and could use some support right now. Maybe ask for someone to assist you or take some time off. You don’t even need to go into details just say you have started to have seizures again and need time to recuperate from them (which you do btw!)

I would also approach the local authority to see it they are able to provide you any respite care for your son even if it is just a weekend so you can get some proper rest.

Original poster

Livingtothefull · 21/07/2021 22:42

Thank you so much for your responses, they mean a lot and are really making a difference. I can't say any more right now, I have been ill again.

I am taking the advice here, have worked on eating healthily. Went for a long walk, it was a beautiful day and I really enjoyed that. DS home for the Summer holidays this week, we are trying to get carers to support us over the next weeks.

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Original poster

Livingtothefull · 27/07/2021 23:12

I am sitting up again, contemplating facing the next challenging day. I am heartily sick of having to drag my cowardice through yet another day; it will insist on coming along for the ride. Doesn't it know it's not welcome?

I just want to be a machine that does brave things and shrugs off personal attacks.

I wish my life would get easier, better suited to my personal limitations; but I know it never will. My life is full of good, character-building stuff...yet I remain a coward and inadequate.

I wish I could feel equal to what I am facing...not feel that I am a coward trapped in a hero's life. I don't belong here.

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ToLiveInPeace · 28/07/2021 08:29

You aren't a coward in any way, you are a giving, selfless person who has overstretched for too long.

I am struggling with burnout and recognise that sense of anger with oneself that you described in an earlier post. It's truly shocking though to hear someone else say it, especially someone in your situation. You are doing so much, doing all you can.

Amid all of this, please try to have compassion for yourself. And please be as honest as possible with others about how you are struggling and what help you need.

The only logical outcome, if things carry on as they are, is for you to feel worse and worse. For yourself and your DS, please talk to your manager and anyone else involved to think about what strains can be lessened. You need and deserve that.

Guineapigbridge · 28/07/2021 08:52

This is CLASSIC burnout. Talk to your manager. Tell her you're having a breakdown. Tell you you need time off; it needs to be now, you can't go on.
You need time completely away. You're allowed to ask for it, the same way you'd ask for time off if you broke your back or had an aneurysm.

Guineapigbridge · 28/07/2021 08:53

Btw there is an epidemic of burnout. All the stress of this past year and a half.

peridito · 28/07/2021 09:16

Oh dear Lord Livingtothefull ,that you should live such a difficult life ,work so hard to deal with it and as if that weren't enough for any mortal ,feel guilty and a coward on top of it all .

I wish there were wiser things I could say or that I could just give you a big hug .