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.
Fatasfook · 15/10/2018 23:44
You sound so brave. I have a young child with a disability and I know what you mean about not being able to talk about it because it makes others feel awkward.
Disquieted1 · 15/10/2018 23:46
My daughter is 11 and suffered traumatic brain damage three years ago.
You are not alone. I don't have the answers as I'm asking the same questions. I just wanted you to know that you're not alone.
A day at a time. Sometimes that's all you can do.
madroid · 15/10/2018 23:52
I think you have just got to brazen it out at work. Act as though you are the best flipping employee they've ever had and that they're damn lucky to have you in their organization.
Which indeed they are!
I'm sorry you feel sad and isolated. It sounds very tough but like you're doing a fantastic job.
I'm sure people are unsure of what to say but beyond that feel a lot of sympathy and want to help.
Get them fundraising for something to help DS? Involve them?
ChocolateCard · 15/10/2018 23:52
You sound amazing. You truly do. I’m in awe of you keeping all that going alongside a successful career. Wish I could say something more useful.
Livingtothefull · 16/10/2018 10:02
Thank you all. It helps me so much to have positive posts like yours and yes I know I am not alone.
Some great advice too...agree Disquieted1 that I need to take one step at a time during tough times. It is so easy to lose sight of that but remind myself I have to cope just with what the day brings.
Really good advice Madrid about how to approach work. I called my boss today & explained what had happened & gave him an update on what was happening, he said to take the time I need to & not to worry about work. So need to take him at his word & not feel guilty.
I feel guilty enough about my DS. When the school called us initially they said it was a 'superficial' head injury.....he has a cut across his forehead with glue stitches, his eye is swelling shut so will probably be black & blue soon. He can't save himself if he falls as we would due to his disability. I can't even feel angry about this though, just guilty every time I look at his face. He keeps asking me 'Has the cut got better yet?'.
Livingtothefull · 16/10/2018 10:03
Sorry madroid....spellchecker should have left your name alone!
Livingtothefull · 16/10/2018 10:49
DS eye is closing up with swelling & is black & blue. I am thinking whether I should take him to the GP to check if he will be fit for school tomorrow or should stay off longer...AIBU to just turn up there? If I try to call for an appointment they will offer one in a fortnight's time as normally happens.
Livingtothefull · 17/10/2018 20:41
I went to the GP yesterday who confirmed DS was OK. His face is in a total state though, it is really upsetting to see.
I admit I am struggling at the moment. I went into work today & felt literally nauseous & dizzy with stress, I nearly threw up on the train....was like an automaton at work. I just feel like I am not coping & thereby letting myself & family down. And I was doing better recently...feel as though I am back to square one again. I want to rise above all of this and can't.
Cath2907 · 17/10/2018 20:48
You are doing brilliantly. In the words of Winston Churchill- when you are going through hell just keep going! I am sure work understand. I have a kid without a disability but sometimes have to take time for her. I am. Director at a consultancy so high work load and high pressure. They’ve never been upset with my needing to support home. Hope your son is feeling better soon!
Livingtothefull · 17/10/2018 22:46
Thank you Cath2907. Yes I will keep going & I doubt anything is going to stop me - wish it would get easier though but can't make that happen so will just plod on. My boss was fine today & supportive but at the same time I do need to deliver at work - live in fear of messing up.
There is a lot of background to this - due to the cutbacks & reduction of special needs care things have got a lot tougher. This isn't the first incident we have faced....DS had a seizure last week at school, the carer with him at the time didn't know how to deal with it as he hadn't the training so had to leave him on his own to find someone to help him - major safeguarding issue. You would think that as he is prone to seizures, anyone allocated to care for him would be trained in how to handle these? But they don't have the resources.
Honestly I feel so isolated irl, there is nobody to talk to who gets it except DH who is in the same boat to I can't overburden him. I try to talk sometimes & it is like everyone is on another planet. Many people fondly think that special needs provision is generous and that I am over sensitive - it may have once been the case (re generous SN provision) but it certainly isn't true now.
Then people suggest I get counselling....counselling to what end? To talk about poor me & how hard I have it? And what will the counsellor say? 'There there, poor you'. I know what the issues are & there are no solutions.
So the only thing is to carry on and, robotically, not-do the things that are counter productive. Not-have a nervous breakdown, not-have a screaming fit at work etc.
Livingtothefull · 21/10/2018 01:25
I just feel so isolated. It is unbelievably isolating, dealing with this.
Livingtothefull · 21/10/2018 01:51
Thank you Disquieted1. I just want to feel I fit in somewhere as IRL everyone seems a little disdainful of me. I just want to be loved.....but far far more important, I want my darling boy to be loved.
Livingtothefull · 21/10/2018 01:54
I am here, doing what needs to be done to support my DS at a safe distance from my emotional distress. I have to let the emotional distress do its thing, its worst over there and not be unduly drawn in.
flapjackfairy · 21/10/2018 02:00
I have 2 children with complex needs and one has a devastating form of epilepsy leading to massive brain damage and he requires full time care ( Hence the timing of this post as I try to get him settled again and look out for seizures ).
As you say it can be v isolating at times and it is hard for others to understand the day to day challenges of living with such conditions. In fact the only support we have been given is 20 hrs a week of continuing care funding to pay for a carer 2 nights a week as he requires a Bipap machine sats monitor , oxygen etc. It was awarded last Dec and so far we have not had a single hour of support despite spending hours filling in care plans and training staff who then decide it is too complicated. They simply cannot find anyone to do it and we carry on as before. Sleep is often in v short supply and it gets v tiring .
But please don't feel alone as there are many people in the same boat. I have made contact with others on here and on other forums and that helps as it is someone to communicate with who really understands and I try to find parent support in the local area as well.
And btw I am full of admiration that you have managed to achieve so much in the working world in view of your sons needs so be v proud of that and I am sure that your employers and workmates feel the same way.
Hope you manage to chill a bit tomorrow and get back to work refreshed next week. X
Disquieted1 · 21/10/2018 02:03
IRL people just don't know how to act and react. I know - people who were close to us don't know how to act around my little girl.
I don't have any answers I'm afraid. If there was a magic wand I'd have waved it myself. Just keep talking.
Livingtothefull · 21/10/2018 02:12
Thank you and respect to you both. I don't claim that my troubles are worse than those of many others.
flapjackfairy · 21/10/2018 02:13
I feel your pain I really do. It is so hard when you see your child suffering and can only do so much to relieve it. It might help to contact an epilepsy support group even if just online or you can pm me any time to offload your emotions . You need to get your emotions out I think and if counselling gave you room to vent it may relieve the pressure at least for a while. There are no magic wands as we know but I have to talk my feelings out a lot or they drag me down.
What support do you get if any ? Though as said above I know it is often a case of finding someone who can deliver it (. hence your issues at school ) Do any of the adoption charities provide people who can go out to school and offer free training ? And surely you have a case on legal grounds if there are safeguarding issues though no doubt the last thing you feel like doing now is getting into yet another fight that expands more energy.
Sometimes the things that should be there to support our children only add to the problems sadly.
Anyway we are having a rough night so off to get rescue meds to try and stop the seizures swill be back later if you still want to chat xx
greenlynx · 21/10/2018 02:25
You are doing great , you are coping with all this and with demanding job on top. It’s far too much for one person and you are coping with this. You should be really proud. Hope your son will get better soon.
I have teenager DD with disability, and all these questions are in my head constantly. It’s like you are never stop worrying and the worst is that I can’t think about future at all, it looks very scary. I can’t even talk with relatives about this - they don’t understand and they live in different country so not really involved. I don’t have a lot of friends, and to be honest I don’t have time and energy to spend with friends because all my time is around my DD’s needs. But I joined MN more than a year ago and noticed that it helped me a lot. I feel less isolated and lonely. I started “silver cloud”, some sort of programme for anxiety and couldn’t go through it. I felt worse, really annoyed and angry because I couldn’t find answers to all my questions and I was even more worried about wasting my time on it. So I do understand how you feel about counseling.
Sorry if it’s not very helpful, I just wanted you to know that you are not alone.
emss55 · 21/10/2018 02:56
Hi OP just wanted to say how amazing and lovely you sound. So sorry to hear about your DS he is lucky to have an amazing Mum like you though. I just thought there might be some support groups you could join /attend to get support from people with a similar life to yourself. Try to make time for yourself though as you need and deserve it.
UnRavellingFast · 21/10/2018 06:42
Op I hope writing it down here helps relieve a tiny bit of pressure. Reading your words leaves me wanting to tell you how moving they are but that won’t help! Isolated comes up a lot in your words so keep talking here. Thank god mn is 24/7 and makes no further demands from you. You are among friends.
Livingtothefull · 21/10/2018 15:18
Thanks so much, yes will try to keep talking. If I could only be certain that my DS would be happy, secure and cared for all his life it would be enough for me. That is what is at the root of all this. One thing that is isolating is that so many still fondly believe that this country looks after its disabled and ensures their needs are met to the extent that they can have a good quality of life; this is no longer the case.
flapjackfairy · 21/10/2018 17:21
I totally understand what you.mean it is a massive worry. But try not to destroy the present by worrying about the future. In my experience the future has a way of unfolding ahead of you and the way becomes clear as you get there. X
UnRavellingFast · 21/10/2018 18:56
I can understand your fears and worries. Can you just tell yourself, we’ll get through Christmas and then we will think about the future but not before? Just to give your poor tired mind a break. X
Livingtothefull · 21/10/2018 18:59
I will try, I have felt really low today & I know it is impacting on work too....am so preoccupied & find it really hard to care about anything else.
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