To often feel like giving up (though I know I can't)?
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 DS...it 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.
UnRavellingFast · 21/10/2018 19:11
My recent stressful time isn’t on the same scale as yours but I did feel overwhelmingly desperate at one point and went to doc for some anti depressants. They’ve taken the edge off while I go through my divorce and I intend to taper them off soon. Would this be an option to help you feel less fogged and stressed- though obviously it doesn’t solve any problems apart from supporting you mentally. Is it it helpful knowing there are ppl on here with similar situations? Perhaps you can let off a little of the huge pressure you’re under using those spaces too sometimes.
DisappearingGirl · 21/10/2018 20:04
Oh OP I don't really have any advice but I just wanted to say I feel so bad for you. You are doing amazingly. I have two NT kids and a busy job and I feel like I'm drowning sometimes.
I think some of the reasons people don't seem to like talking about this stuff in real life are the same as the reasons I nearly didn't post here: a) they don't know what to say, b) they don't like thinking about the fact that some people have it really tough through no fault of their own and there's no easy solution, c) they don't like thinking about the fact that it could be them, there but for fortune.
I can't speak for your employer but if someone I worked with was dealing with what you're dealing with I'd want to do my best to support them ... though I couldn't completely take away their deadlines.
Good luck OP xx
Mikeymoo12 · 21/10/2018 20:21
I'm so sorry you feel so alone. Although my child does not have a disability due to splitting from his father when he was only 5 months old I had low mood and an eating disorder so I can relate to your loneliness. I do not understand why people cannot listen to you when you say about your weekend, we all have different lives and no one's life is perfect so why shouldn't you be able to say what you have and haven't done. Sometimes as people we just cannot accept difference and it's a huge issue that people have. Are there any support groups in your area where you can talk with families who understand how you feel and you can share experiences? Personally if I worked with you I would give you a huge hug and ask you to tell me about your weekend. P.s definitely find out more from school about what happened if you can!! Much love you're amazing xxx
Livingtothefull · 22/10/2018 07:06
I got woken up at 5.30am by DS playing his iPad at full volume, heaven knows what the neighbours must think of us. So I get him dressed, toileted him and fed him his breakfast whilst getting myself ready for work.
2 mins to write this...as there isn't enough time to have breakfast myself - will get something on the way to work. Then wait for the carer to arrive 7.15 (hope she isn't held up) then rush off to work & try not to be late.
I am so stressed at the moment & feel I just can't do this any more but I have to. I feel it is all just too much.
BigBairyHollocks · 22/10/2018 07:20
Oh OP,I don’t have anything particularly useful to add,but I just wanted you to know the love you have for your son just shines through your posts,and you seem like a wonderful mother.Your circumstances sound so difficult,it’s no wonder you’re struggling a bit.Try to remember that you won’t be able to look after your son if you fall over,so please see a doctor and try to look after you.
Chosenbyyou · 22/10/2018 07:48
OP you sound like a lovely mum who is doing the absolute best for your DS.
It’s awful when they have a visible injury on the face. It makes you feel guilty/upset which is completely irrational but it just hits you right in the gut every time you look over.
I bet you are really good at your job and you are the only critic.
Take care x
DeadGood · 22/10/2018 08:31
OP, reading this it’s so clear that you need someone to talk to. Even if the counsellor won’t be able to “fix” any of the problems you face, the act of talking is in itself therapeutic.
Either that, or one of the boards on here for parents with SN children, so you can offload a little.
I hope you can take a little time to relieve a little pressure, it sounds like you are on the edge. Good luck. Xx
Moneymatters18 · 22/10/2018 10:13
My dad's in your situation and it's really hard going. Dose your son get direct payment? My brother has another carer employed by my dad which is paid for with direct payment it's not 24/7 but I would say at least 20 hours a week and it makes the world of difference. Dh and I also help out where we can and we take my db out or over to our house even if it's just for tea and a movie it's good for everyone. You sound very brave though you need to find out if there is anymore help you could be entitled to.
MrsPatmore · 22/10/2018 10:55
I know you have just started this newer role but can you discuss this with your manager? If you have permission to have time off, go in later etc it might take some of the stress away. You are burning out. Can you afford to go part time? Maybe visit the GP and talk about the level of long term stress and anxiety you are experiencing.
Livingtothefull · 22/10/2018 19:38
I could discuss this with my manager; but supposing that he just thinks I am not capable of doing the role? I had a brain block in a meeting 1st thing this morning; I wasn't expecting to need to contribute, was suddenly asked what projects I was working on; my mind went blank & I couldn't remember a thing, I looked such an idiot.
I just felt as though I had adrenaline for brains, couldn't string any coherent thoughts together for a while...just sat there gawping blankly at my screen unable to write a single email.
Then home just 10 mins ago, I got snappy with DS because he got demanding as soon as I walked through the door. My poor boy.
I have made a GP appointment, can't get one till next week though. But I can't go on like this can I? I'll probably get the sack anyway if I carry on making an idiot of myself.
UnRavellingFast · 22/10/2018 20:09
Can you call GP’s first thing and get an emergency appointment. This is an emergency and they will recognise it as such. Don’t explain to receptionist just say emergency. Your doctor will be helpful and sympathetic. You are a priority and will be treated as such. Good luck. People care about you.
Livingtothefull · 22/10/2018 20:19
Hi, yes I get direct payments for my DS, they do mostly go on carers so we can work though. We are paying for a carer over half term. Of course it does mean that we don't need to book leave to care for DS so it does help.
We do get a little respite care too (a day every six weeks or so).
I could try to get some counselling so will ask my GP about that next week. But tbh I really just want things to get easier.
I hope that they will decide on balance I am good at my role UnRavelling. And no they can't just risk dismissing me unless they have looked at reasonable adjustments; but ultimately they don't have to put up indefinitely with a worker who cant do the job; particularly if I have fewer than 2 years service and thus far fewer rights. If I am dismissed I will feel as though I have let myself & my little family down.
I must come across as such a moaner & naysayer. I honestly don't mean to be this way; I really appreciate your advice, it is helpful & I am taking it on board. I am just thinking aloud, hopefully will find a way through.
MonsterTequila · 22/10/2018 20:23
Op you are doing amazingly well. I have a young child with a disability so I know how isolating it feels.
When it comes to disabilities this country is in dire need of a huge overhaul of its attitude. I think it’s so vital children start getting ‘disability education’ lessons in school. It’s ridiculous it’s not a thing already.
Livingtothefull · 22/10/2018 20:23
Thanks UnRavelling I may do that. I really feel that I am breaking down now, it has been a long time coming. And NOBODY to talk to irl, for various reasons I don't feel there is anyone I can burden.
Ah well I need to get DS toileted & to bed soon then sort myself out. Then get ready for another 5:30am start tomorrow.
A friend of mine with adult children at uni, doesn't work as her DH earns enough for them both, told me that she always thinks of me whenever she wakes up as early as I get up & before she rolls over & goes back to sleep.
Livingtothefull · 22/10/2018 20:36
I had my embarrassing moment at the meeting that my cheeks were burning & I felt mortified. Nobody said anything but I felt they were all laughing at me.
It is ridiculous; blushing like a schoolgirl because I care so much. Why cant I just shrug it off: 'Sod it I don't care what you think, you have no idea what I have to deal with every day of my life so you have absolutely no business judging me'. Why can't I have the belief in myself and the self worth to drop these feelings?
I hear colleagues talk about their weekend; evenings out, shopping trips, their pets' sicknesses etc. and I think 'You don't want to hear about the weekend I have been having. You don't want to hear how my DS had a temper tantrum on the platform when we were getting the train home on Saturday, how he was trying to push his wheelchair onto the platform with a train drawing in, how he bit me on the arm (v painful) when I was trying to restrain him, how we couldn't get in the lift until he calmed down because there was a baby in there and it wouldn't be safe but there was no other way of getting out of the station'.
That is not the kind of anecdote you bring up in a light hearted conversation about each other's weekends; so I give them a sanitised (ie false) version instead. That is what is so isolating about it; everyone else is being natural chatting about their weekends, I am acting and being false. And I think they can maybe sense that something is 'off', that I am not being straight with them so I don't think they trust me.
MonsterTequila · 22/10/2018 20:58
OP I think every parent of a disabled child feels like this sometimes. It’s a continuous grief & pain that builds and builds and builds by itself because society doesn’t accept our children the way they are - it’s not normalised or out in the open where it should be. Historical severe discrimination has meant that disabled people were put away & hidden from everyone else. Where as progression has been made for every other minority, those with disabilities are still widely oppressed & discriminated against. The issue here isn’t your lovely son. It’s society.
UnRavellingFast · 23/10/2018 13:51
Although your colleagues won’t be facing your scale of challenges at weekends, they will be embellishing. They will be doing the usual sanitising for work that ppl do. I’m sure they’re not judging you- they’d have to be monsters to do that. Thinking of you. Try and see gp ASAP as from your words you do sound like you need some support which is eminently reasonable ! You deserve to be supported.
flapjackfairy · 23/10/2018 17:05
Oh Living I can so relate! My 12 yr old is getting increasingly challenging in his behaviour and it is exhausting. I have had so many embarrassing incidents recently and it is hard not to feel judged when others dont really understand. I feel like even when he is calm and having a good day I am constantly in a state of high alert waiting for the next outburst which is what makes it so hard. You can never really switch off.
I think you need to see if you can access more support. Can your gp support you in lobbying social services for more respite? I know it is awful but sometimes you have to shout the loudest to get the little scraps of help that are available.
Livingtothefull · 24/10/2018 20:59
Thank you all. It really helps me to know I am not alone....it is really difficult for those outside the situation to understand what we live with so it is not too much to ask that at least we should not be judged.
I know intellectually that I shouldn't care what people outside the situation think of me but it is really hard to not care in practice.....it feels like all my nerve endings are on the outside, and as soon as someone says or does something hurtful it has cut into my heart before I even know what has happened.
I will discuss this with my GP and see what they can do to get us support. I want to get some medication to take the worst of this awful fear away....would like to get some therapy too but will probably wait months for that. And although yes it is helpful to talk about it & say it like it is (as I don't get to do that very often) I don't want just a talking shop where I just regurgitate all the emotional upset & the therapist listens sympathetically. I want to try to find a whole better way of thinking.
The good thing is that I haven't been talked to yet at work about how poorly I performed on Monday so - just maybe - that conversation isn't going to happen. I had a brief discussion with my boss about what I have on my plate & he seemed quite receptive & sympathetic. I AM good at my job - but currently I feel so stressed out that it is affecting my performance in the short term.
It is true Monster that disabled people aren't truly accepted into society & often only lip service is paid. You find a whole other side to it that you never knew existed, much of the hostility we encounter has to be experienced to be believed so many of those I speak to just don't believe it. If I could just be sure that DS would be loved and respected, treated as part of the community for all his life that would be enough for me.
UnRavellingFast · 24/10/2018 22:25
You really are the thoughtful, deeply caring parent that your son needs. You need support too so don’t minimise when you see gp as we all tend to do! The nerves on the outside thing sounds so painful. I hope some temporary meds might take the edge off as they did for me. I also got 6 weeks’ worth of weekly talking therapy which obviously couldn’t change the facts but did help me because I was getting support and that somehow bolstered my subconscious if that doesn’t sound too woo. I wish you all the best. Always here to talk if you need to off load. Xx
Livingtothefull · 25/10/2018 20:34
Thank you both. Yes I will look into the support that's available....as you say UnRavelling nothing can change the facts but I want to find better ways of managing myself too.
I will pursue it with the doctor next week...have tried to address this before but it didn't really go anywhere so I may need to be more insistent about the support I need. And yes the idea of feeling I am getting support boosting the subconscious really resonates with me...at the moment I don't feel as if there is anyone supporting & advocating for me, I cant unburden myself all the time to DH as it isn't fair on him.
I slept well enough sitting although it is a killingly early start every day, and I only get space when I am back at work. DS injuries are healing nicely which is good.
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