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To often feel like giving up (though I know I can't)?

143 replies

Livingtothefull · 15/10/2018 23:39

I got home from work this evening & found out from DH that DS had been taken to A&E. DS (17) has severe physical & learning disabilities and epilepsy, he had a couple of seizures last week and today fell whilst at school and had a head injury which needed stitches at A&E. We are trying to get the full story out of the school as to what happened.

DS is home now but we have been told to keep him home under observation to check him over 24 hours. So I had to text my boss today to say what happened & that I couldn't come in tomorrow as needed to stay with DS. Her response was sympathetic BUT:

AIBU to worry about what it means for my work? I have a new fairly senior job & am on probation....I have a lot of deadlines, AIBU to worry they will feel I just can't give the commitment my job requires due to my personal circs? I do find it hard to juggle the job with worries about does cause me to panic sometimes, then I worry they think I don't have what it takes to be successful in the role.

AIBU to just feel horribly isolated most of the time? When the team talks about their weekends, who they visited, shows and tv they watched and sports they played I just feel they are on a different planet? Not their fault at all....but I spend all weekends looking after DS's personal care (that phrase hides a multitude of sins), I touch sometimes on what I have had to deal with & I can see them getting embarrassed, that they don't know what to say. So I change the subject to spare their feelings and move onto more cheerful subjects. What else can I do?

AIBU to be just seriously upset and devastated today at the state of my DS? His face is bruised all over & he needed stitches, his eye is swollen so will probably have a black eye in a day or two. I will have to watch him carefully tomorrow to ensure he doesn't deteriorate or have another seizure, all being well DH will care for him Wednesday & I will go back to work as if none of this happened.

AIBU to feel lonely and sad and realise that there is NOBODY to talk to? I won't ever give up though, am in no danger of doing that for DH sake - oh but how I wish things would get easier and I didn't feel so horribly isolated.

OP posts:

devoncoast · 04/11/2018 22:24

I think you and your husband sound like fantastic parents. Our little boy has additional needs also. I spend so many hours of my life worrying about his future. It tortures me actually. Then the present daytime stuff does also, he has just started reception. I almost have panic attacks at the thought of him being bullied and either not realising or not being able to cope. Breaks my heart. I don't work as I have 3 under 5"s and he is my oldest but my husband has a stressful job and so he is out for very long hours. He also worries about how he is compared to people who have a normal life and can put in more focus at work. Luckily since we have told his work they have been supportive. I hope this lasts. Trouble is everything is just so much more stressful/panic inducing when additional needs are involved. I am sure work will keep you on. They are lucky to have you. X


Muckingfuddle123 · 04/11/2018 22:25

Oh my goodness I have just read your thread op.
I was in your position six months ago. I was very jealous of my work colleagues and just wanted to be ‘normal’. Looking after a child with epilepsy nearly pushed me over the edge, trying to run a home look after a family, look after a child with a serious disability and work just got too much for me. My mental health was declining very quickly so I had no choice but to give up work, to be able to look after my daughter I needed to be healthy myself. I didn’t see a doctor as I would have cried through the appointment. I gave up work concentrated on getting myself better in order to take care of everything else. Take care op x


twinmummyyeah · 05/11/2018 09:36

Hi I juts wanted to say I think you are an amazing mummy and you need to give yourself credit. You are a mum juggling lots of balls and a lot more than most of us you should feel really proud. Don't feel
Guilty that sometimes you wish things would be easier thats normal to want life to be a little kinder. Is there maybe an online/ Facebook group you could join of mums who also care for their children so you could
Find some comradery and support when you feel isolated? Take care of yourself
Too xx


Livingtothefull · 06/11/2018 21:21

Dear all, thank you so much for your support. It means a lot as I don't get a lot of support irl other than from those whom I don't want to burden too much.

I have had a difficult couple of days....yesterday was really stressful as I had something really painstaking & upsetting to deal with. I was panicky although I think I handled it OK in the end but was really worried as it is a sensitive time. Nobody has said to me (yet) that I didn't handle it appropriately.....but it involved confidentiality & data protection issues & at one stage I thought I had breached them and the implications for that would have been serious.

Last night I woke up in a panic & cold sweat about it. I dreaded going to work to be greeted by emails complaining that I had got it seriously wrong & thereby let down my colleagues & manager. It took me all my courage to go into the office, sit down & switch on the email. Thankfully none of the repercussions I dreaded.

It sounds ridiculous writing it all down.....but when I am overtaken by nerves it is like a runaway train & I cant do anything about it. I certainly can't rationalise my way out of it. This morning I toyed with the idea of resigning rather than have to go in....anything to spare me this level of fear.

I keep thinking that I shouldn't feel fear like this, that I don't deserve it and there is no need for me to feel perpetually guilty & as though one day I will be 'found out' as lacking in professional ability.

I don't know what to do about it though......maybe the medication will help? How do I stop feeling like this, cut the fear dead in its tracks?

OP posts:

UnRavellingFast · 06/11/2018 23:00

It’s very difficult. To a lesser extent I have experienced this. I think it could be projecting your real fears about your son maybe into your work. The meds should help when they kick in. Could your doc prescribe a short term course of tranquillisers to break the chain of worry and enable you to get onto calmer waters? Also I saw a leaflet at my gp’s that showed you can have on line chat therapy ie anonymous and in your own time. Would that help? Keep venting here, it’s so important for you to have an outlet.

Final note- you are a fantastic mum and clearly a much valued employee.


Livingtothefull · 08/11/2018 22:45

Thank you I am hoping the meds will work soon & I will feel better. I am having a call from the Wellbeing services tomorrow.

I feel such a fool though because I have been told today that my work contract is coming to an end shortly. I was told it was because of lack of work....I do want to believe that and it is not an excuse and the real reason is that I am a crap employee. I am sick of being crap in everyone's eyes....and then go onto the next job interview and try to convince everyone that I am wonderful even though the last lot of people thought I was crap. Self esteem needs SOME foundation to build its tower on.

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UnRavellingFast · 11/11/2018 23:12

Ah love so sorry to hear about the contract. Please don’t feel it’s because of you though - contracts end and it’s a shame but generally means another door opens- that’s how it’s worked for me- disappointment in one job leads to a new and happier situation that is round the corner. And you will have a breathing space. I have had contracts end and it does feel bad, but it’s not you, it’s the way contracts work. I’m glad the well-being service is going to be in touch because you do sound very down and you definitely deserve some solid support. Hang on in there, have faith that things will feel better soon. Think of all the incredible things you do, that most people wouldn’t cope with like you do.


Livingtothefull · 14/11/2018 20:05

Thank you UnRavelling....the self pity didn't last long because I just can't afford to indulge it. I have a letter confirming that my contract is ending early and the work I did do, I did well....need to just accept that at face value and not forever read into things what may not be there.

Indeed one thing will need to another and I wasn't 100% happy in the role, but stuck with it because it was a great learning experience. I have an agency interview in a couple of days so hopefully that will lead to something.

I had my first well being appointment this week, they seem to think I should go for a group session which tackles anxiety. I want so somehow be rid of the fear and inferiority feeling, and feel better about myself. There is too much going on in my life, I just can't afford to feel this way.

I feel that many people in my shoes would do at least as well as I have done so I think most people would cope as I have coped, I don't feel particularly special for that. However it is absurd that I should feel inferior to anyone, that I should be afraid to look anyone in the eye (as I do, frequently). Please help me talk myself out of feeling like this somehow!

OP posts:

mumto2babyboys · 14/11/2018 21:35

3h fund do breaks for carers. You should give them a call or check their website. they can maybe arrange it so that you both get respite


UnRavellingFast · 15/11/2018 00:26

You are not inferior to anyone. You are certainly a more committed and incredible mum than I think I could be in the circs. Also you’re successful in your career. Right there you have proof if it were needed of you real worth and excellence. Try and tell the little Voice in your head (that also lives in mine and many people’s!) that’s saying, yeah but anyone could do this, etc, because they might and they might not, but it’s you who are in this very challenging situation and you’re handling it with compassion, love and skill. Be proud of yourself, you really do deserve to.


Livingtothefull · 15/11/2018 22:47

Thank you.....I will try to take whatever help I can, I am sure I will muddle through somehow. I have an interview for a new job lined up next week so fingers crossed.

I am feeling guilty now because I am not so motivated at work now and not performing to quite the same level as previously. Crazy eh? The guilt and inferiority feelings are just off the scale absurd....they are a big lumbering albatross that suck up all the energies that should be devoted to other things now.

How can I possibly be so motivated when the job is coming to an end & there is no point trying to impress anyone any more? It is hardly my fault that I have to focus now on the next thing, although will try to earn my money in the meantime.

Thanks mumto2babyboys, am checking out that website. I already have some respite lined up over the weekend.

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Livingtothefull · 18/11/2018 02:01

I am just so so tired. It is hard to explain how stress makes me literally nauseous at times; I was in a supermarket today and then it hit me how much I have on my plate & I really thought I was going to throw up.

I feel so much stressed & in real life there is nobody on our side. I think the country is being governed in a disastrous way; I see it in the way the vulnerable are being treated. We are being taken to the very edge - and my little family are not the very worst off. Anyone who has a conscience and a heart should be appalled at what is happening at the moment.

I feel that our government is utterly letting us down. My DS depends on medication to maintain his health; if he doesn't have it he could have seizures which could cause him further brain damage. Yet this Government risk a no deal Brexit, risk us being pushed off a cliff? They are just playing with us. If harm is done to my DS because of this I will never forgive them.

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UnRavellingFast · 19/11/2018 22:14

Thinking of you OP. I have had an unbelievably dreadful time last couple of days with teen. I was thinking of you and how you have to handle so much all the time. Hope you’re ok.


mumto2babyboys · 20/11/2018 17:07

Truly awful. Just try to make the best of it and plan a good Xmas.

Have you thought about being able to get some counselling for yourself because it must be exhausting.

Nurses work shifts but you are always on call it sounds like

Is there no possibility of him going into residential care? And you visiting frequently?


mumto2babyboys · 20/11/2018 17:10

Even when at work you know you have to come back to face extra care duties

When someone dies you can claim compassionate care leave from work just to deal with it but you are working and dealing with all the extra workload on top

It is such a shame there is not more help available

Stay strong! X


Livingtothefull · 21/11/2018 20:36

Thanks both. We are looking at long term solutions mumto2babyboys, and ultimately is likely to involve residential care.....because this will be in HIS interest, we won't be able to look after him forever so he will need to get used to being cared for by others. And of course we will continue to spend loads of time with him, take him on holidays etc.

The plan was to have him in a residential college; we had planned this, selected the college and had been offered a place but unfortunately the local authority was not willing to fund this. We are hoping this is resolved in time for the next academic year.

I am sorry that you have had a tough time too UnRavellingFast. I know that I am not the only one with troubles to handle. All anyone can do is just carry on as well as they can, and wait and hope for better times.

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HollowTalk · 21/11/2018 20:56

I have read the whole thread and am in awe of you, OP. You're having such a difficult time and I'm furious that the government and the council aren't supporting you in the way they should.

One thing - do you have to work full time? It seems as though you and your husband are putting yourselves under tremendous strain. Is there any way you could work a shorter week, so that you have time to deal with everything? I'm sorry if that's a stupid question, it's just that you have shown us how stressful everything is.


Livingtothefull · 22/11/2018 23:00

Thank you is difficult in many ways but I am doing what has to be done, I just keep on keeping on. I may moan here about things being hard, and in many ways it is. And yes we should be getting far more help than we do but we are not alone, we are much luckier than most. There are so many people suffering hardship at the moment who are worse off, 1 in 200 people homeless is the latest that not mind boggling?

A shameful statistic if ever I saw one, for a wealthy country like this which prides itself on being civilised.

I would hate though for anyone to read this thread and feel despair. There is so much that is good in my life too that transcends the difficulties. My dear adorable DS for one. But very straightforward practical things could be done to make my little family's life easier. It is a shame that it is not happening, for us or many other vulnerable people.

It's not a stupid question at all, however for the time beingI have to work full time Hollow... both for financial reasons & also because there are very few PT jobs to be had in my line of work. If anyone is going PT it will be my DH because his health is not good, I would love to get something better paid so that he could have a little space.

OP posts:

UnRavellingFast · 29/11/2018 21:40

Hope you’re ok, OP. Thinking of you.


Livingtothefull · 03/05/2019 20:10

Dear All, I thought I would 'resurrect' this thread and give an update.....hope that is OK.

Well I got another job and it is all going well so that is all good. It is a supportive working environment which I do need.

However my DH health has taken a downward turn. He needs a very risky op in a couple of weeks time (they are fast tracking him). I will need to be at home with him while he is recovering as it won't be safe for him to be on his own.

I know he is stressed about it, he was talking really morbidly the other evening about how where his life insurance docs are, where he wants to be buried etc if 'something should happen'. He is stoic like me but I know he is scared and so am I. I don't realistically think the worst will happen....all being well he will come through it and his quality of life should also improve.....but part of me is just petrified about how I would be supposed to cope without DH. He is a superlative father to DS and does if anything, more than his fair share.

Just wondering how I will cope with supporting DH recovery and caring for DS is scary enough.

I had a bit of a setback at work.....a colleague (whom, ironically enough, I have bent over backwards to help) wrote me a really rude email and copied in various members of senior management because he took exception to something I had done, I did not demonstrate enough sympathy for his personal circumstances it seems.

It backfired on him manager was really supportive of me particularly as he is aware of my situation right now. But I am surprised how sensitive I feel about it at the moment. Normally I would just brush this kind of thing but I think I am struggling more than I even know.

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Livingtothefull · 03/05/2019 21:24

BTW I have been on Citalopram which seems to be helping. I call it the 'anti-fear elixir'....does that rhyme? I can't believe I am still standing, dealing with this and even joking. But it seems to help give me the psychological space to contemplate my own terror from a safe distance.

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Livingtothefull · 04/05/2019 11:23

I have got into trouble with a friend of mine this morning because I told her we burned an election campaign leaflet addressed to my DS recently. It was from a political party which we don't personally agree with and we feel is accountable for a lot of the hardship suffered by disabled people like DS (will leave you to surmise which party this is).

In our disgust DH and I ceremonially burned it. We didn't show it to DS as it wouldn't have meant anything to him (he has a mental age of about 4).

Dfriend said that we had no right to destroy DS mail, that he is an adult and has a right to receive all his post and that we have in fact broken the law by intercepting his post.

I am a little taken aback by all this. To me, there is no point in passing on mail that he doesn't want, need or understand (personal mail is another matter of course - he always receives that).

We are talking about a vulnerable adult here - what do we do if really inappropriate mail items arrive for him that would upset him? Do we just pass them on regardless because it's 'his right'?

Could anyone advise me on this?

OP posts:

UnRavellingFast · 04/05/2019 20:04

Hi @Livingtothefull so good to hear things are a little easier for you. Glad the meds are a help.

Re your 'friend' what utter crap they are talking. Do they walk in your shoes? This is such sanctimonious nonsense. I would advise you not to give it another thought and to rethink any confiding you do in this friend.

You're doing an amazing job.


Livingtothefull · 04/05/2019 20:20

Thank you so much UnRavelling, I hope all is also OK with you.

That's really reassuring you think that as I was worried that I wasn't doing the right thing by DS...wasn't treating him with the respect due to him as an adult. It is really hard to know we are getting the balance right as he needs support from us with all his life issues, I can forget he is an adult.

OP posts:

BlackeyedGruesome · 04/05/2019 20:30

Yabu burning it.... Should have ripped it up, jumped up and down on it a bit and then burnt it.

You are still has responsible adult and as such are responsible for his post presumably you are also responsible for his financial affairs as well...

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