To ask for advice & strategies to cope with my life better?

[Livingtothefull]

The following is my litany of problems:

My teenage DS has severe disabilities, both physical (wheelchair bound) and severe learning difficulties (he has a mental age of around 4) So DH and I are heavily preoccupied with his care, we have very little outside support except that which we pay for ourselves with Disability Living Allowance. With this support we fit his care around his attendance at special school and our full time jobs.

DS will be leaving school in the next few years so need to plan. We are in the process of applying for the new Personal Independence Payment (even the phraseology sets my teeth on edge - so now DS is supposed to 'aspire to independence' rather than merely 'living with disability'. It is a lengthy stressful process to reapply for what we thought was accepted to be a lifelong, life limiting condition. And I am desperately worried that at the end of it a reason may be found to withhold the benefit from him.

DH has found out that he is going to need fairly major surgery in the next few months. I am worried, not just about him, but about the logistics of caring for DS while DH is recovering.

This brings me to the specific question I have:

I am holding down a professional job in the meantime but I am getting worried about my ability to cope. Although the feedback I have received has all been positive and nobody has expressed concerns to me about the job I am doing. They are aware of my situation with DS and DH surgery and have been supportive, offered flexitime and to work from home etc.

But I can't get rid of this feeling that I am an 'imposter' and am not coping and it will only be a matter of time before I am found out. Every time I make a mistake I magnify it in my head, it doesn't help that I am exceptionally busy at the moment and so I am finding it hard to keep up, whenever somebody has to chase me for something I reproach myself, am paranoid that they are thinking that I am not doing a good job, are going to complain about me etc.

I have had bad experiences in workplaces in the past, and if I am honest I think I am traumatised by the issues we have had to deal with re DS. So these feelings are coloured by this - but I don't know how to get past them. I NEED to keep this job and for it to be a success. I am arranging to get counselling btw which may help; but this is taking a while to set up, & I need some strategies for dealing with this in the short term, can't go on like this!.

My question is: can anyone advise me on such strategies? Have some of you been in comparable situations in the past with multiple problems and stuff going on, and how did you keep a level head? How do I convince others (and myself) that I can cope and not let this fear get in my way? I need to find a way to turn off the fear spigot located in my head?

Sorry rather long & I hope all this makes sense!

[Livingtothefull]

Thank you all. Yes we are trying to get all the help we are entitled to & I am really grateful for the help we do get. We do have to fight for everything like you say OneWay, we do have some respite but live in fear of it being taken away. DS respite carers (who have cared for him regularly for years) were called into a meeting arranged by the Council & told that there was 'reducing demand for respite care'; it was implied that the respite service might be discontinued.
There aren't any fewer SN children in our area so if there is reducing demand this is because the service is not communicated effectively to families (which it isn't). It is also classified under 'foster care services' which I feel is likely to put people off.

DS has funding for one to one care at school at the moment; we are worried that this might be taken away too.

I am worried also that if I admit that DS is hurting me, it may affect the options for him for residential care as an adult. TBH he doesn't hurt anyone else but me, not his schoolteachers (he behaves really well at school) not DH (who can restrain him) only me. That doesn't make me feel good.

I am trying to stay positive but it is really hard. Positivity is taking everything I have got.

[daisychain01]

The ridiculous thing is: I am good at what I do. I have a lot to offer the company I work for - in the medium to long term. But not right now.

These positive words shone out to me, why not try writing down 2-3 achievements and positive things you've done every day.

You'll surprise yourself how long the list is!

[OneWaySystemBlues]

Do you have any support from social services? You are entitled to a carer's assessment as well as an assessment of your son's needs. If you haven't already, you need to get through to the disabled children's team, or whatever it is called in your area.

What you are dealing with sounds incredibly difficult. My son has different difficulties, but adolescence made things 100 x worse and he got very challenging and aggressive. It took some fighting for but we did get social services support/direct payments to pay for some respite. It's even more important as they approach adulthood. There is only so much you can do and you're doing an incredibly hard job as carer, as WELL as challenging paid job which sounds like it would be hard enough without the stress of looking after a challenging teenager with a disability.

I hated having to ask for help, but I was worried that we wouldn't be able to cope and I was worried about what would happen if we weren't there. They only get bigger and stronger and there is a real possibility that you could get hurt. No matter how uncomfortable it might feel, you need to consider your safety in all this too. I think it is even more important as he's leaving school in the next few years.

[Ruralretreating]

Hi Living, I'm sorry you've been having a tough time again. Great advice from Polly there re work. Without meaning to be nosy or cause offence (my knowledge of disabilities is pretty limited) are you getting all the help you can/are entitled to with DS. Can your GP help at all? Being hurt on a regular basis sounds a lot to cope with. Sorry if that's unhelpful, it's not meant to be.

[Livingtothefull]

That's great advice Polly thanks. I live in dread of being told I am not doing well enough, it's ridiculous. I have seen other people being 'let go' & it has made me paranoid….but all the evidence indicates I am doing OK so I need to calm down, at least about that!!

[Pollyputhtekettleon]

Oh OP, what a hard situation. You do a stellar job at all of it.

Regarding the work thing. Just remember that work is there for you to make money and you don't owe them anything more than getting your job done. It's also not the only work in the world and although it feels like an important place where you want to look good and be considered professional and excellent, the reality is that they (the company) would give you to the wolves in a heartbeat if they needed to. So you owe them nothing more than doing your job. Don't give them your headspace worrying whether you are good enough. If you weren't, they'd get rid of you. I try to think of it like this.....take take take what you can't from your job/work and make no apologies for trying to get the most money and nicest situation possible from work. Give give give to your family, friends and private life because this is where my value is limitless and people truly love me.

[Livingtothefull]

It is all hard, I just get on with it & always will but sometimes can't quite believe what I have on my plate. Apologies for the self pity.

Last night we put DS to bed. He wanted to get up again so started to climb downstairs, we explained it was late & we were all in bed (DS can't safely be downstairs or on the stairs on his own).

DS got angry and aggressive, I told him to stop or he would fall downstairs. He shouted 'Good! fall down!' at me & kicked/punched bit me to try to get me to fall downstairs. DH & I managed to get him to bed & eventually he fell asleep…..up again at 4:30 waking us up so no point going back to sleep, just got him ready for school (a laborious task).

So now I have a huge cut on my arm to go with the bruise I already have.

[thesandwich]

Oh living I am so sorry to hear your news about your ds. That must have been heartbreaking.
But it sounds like the ads are helping- is is worth pursuing counselling/ cbt to give you some long term strategies.
But your ds- I have no advice but this sounds really hard. Sending

[Livingtothefull]

Hallo again,

Just to update on a few things. I think that the meds I am taking have started to do their stuff, feel calmer now & somewhat happier as a result. I was hopeful that they would cause me to metamorphose into a superior person: calm, clear thinking, never fazed, the kind of personal qualities I have admired - by taking away the dreadful fear and freeing me up to just cope with what I have to. It hasn't quite worked out that way, I am still me but I don't seem to dwell on things so much.

But the meds haven't and can't stop shit happening. We had an activity planned for DS recently - an adventure of the kind that we thought would challenge and stimulate him, which he could tell his school friends about the next day. He had to do a briefing/training prior to the activity - was lining up with the other young people to do it with his carer, with us watching at a distance - then at the last minute the trainer told us he couldn't safely do it in their opinion, due to his physical disabilities making it unsafe.

I don't blame them at all for this but I was absolutely gutted. I think I was more disappointed than he was, I thought 'just one more thing for my DS to lose out on'.

I had to put DS to bed earlier today and he was in a strange mood, the kind in which I know he can get aggressive. I was actually genuinely scared (as I frequently am) that he would hurt me, he tried to push me down the stairs. It is sad to be his loving mother yet have to take evasive action to avoid him hurting me.

I am sporting a massive bruise on my arm where he bit me a couple of days ago. I am meeting my DM in a couple of days so will have to wear long sleeves, I don't want her knowing how tough things are sometimes.

[Ruralretreating]

So glad it went well today Living and that you mentioned your hard work. A lot of high performance individuals have similar feelings of anxiety/being an imposter but you'd never know it, they are great at their jobs and project an image of being very together. I'm not trying to minimise your experience but to reassure you that lots of people go through this. You are right that it becomes a habit, but habits can be changed. The diary of victories suggested above is a great idea. When you think negative thoughts, try to re-focus on the positive facts (you managed a successful project) and feedback. Another strategy is to think what you would tell a friend in the same situation, you'd encourage her and praise her work, so do the same to yourself. Hang on in there!

[thesandwich]

So glad it went well today!!!! It's good to hear that you are feeling better. Ad's can help so much- and I wonder if something like cbt could help shift some of the negative thought patterns.
Well done.

[Livingtothefull]

Thanks Ruralretreating, I did have the meeting with the boss & was all OK, seemed reasonably happy with the work I was doing. I took your advice & mentioned how much work I had put into the project.

Anyway I feel happier/calmer now it seems I am considered to be working OK and my dismissal is not imminent. Re imposter syndrome…..I spend so much of my time feeling guilty, as though nothing I do can ever be enough, that it has become a habit & it feels unnatural to be positive about myself & what I am doing. I supposed/hope that the more I do it the easier it will get….but I am only too aware of my own shortcomings.

I am feeling better all the same, not so desperate….maybe it is the medication starting to work but time will tell.

[Ruralretreating]

You are doing so well, even though it doesn't feel like that. You sound amazing. Sleep deprivation is awful. Best advice I was given on how to deal with it is keep hydrated and move around frequently. Make sure you do some self-promotion in that catch up meeting tomorrow so your boss understands what your contribution to the project was and how that contributed to its success. It might help with the imposter syndrome too.

[Livingtothefull]

Thank you for that. In rl I don't really have anyone to talk to or to tell me what I am doing right, it feels to me like a harsh and hypercritical world. I am a little disappointed that nobody has said anything positive to me re the project….don't need gushing praise but I think that a simple 'well done/thank you' wouldn't go amiss.

Anyway I am getting on with things as best I can & feeling a little less fearful. My boss wants to have a catch up meeting tomorrow though so I am worried about what that may entail. Fingers crossed….again.

DS is challenging at the moment, he is having very little sleep & that means we don't sleep. DS does things like soil himself, late at night, so that in the small hours we have to put him under the shower to clean him up.

Then the following morning I go to work as normal and try to hide how tired I am. And the others talk about what they did the evening before, and I don't join in because I can't really contribute, as I can't talk about what I was doing.

I may as well be on a different planet, so different is my life from theirs…..and I suppose I come across as anti social and aloof because I can't relate and feel I have nothing to say.

[thesandwich]

Living consider your back thoroughly patted by me!!! Well done!!
The holiday day is a great idea- plan all your favourite things- especially if you can get outside. The trees and parks are beautiful at the moment.
The idea from Armani about writing down the daily victories is a great one- proven to improve mood. Just get a lovely notebook and record three things you are grateful for each day.
It does sound like you are turning a corner- please remember time out is essential maintenance. And remind yourself how amazing you are- because you are. And come on here whe n you need reminding.

[Livingtothefull]

Thanks amarmai, I do feel like patting myself on the back because I managed that project, had more involvement than anyone, and it was a resounding success and a big boost to the company. I feel I did a good job despite feeling so dreadful. Feeling a little happier now about the coming day, I hope it lasts!

[amarmai]

sounds good to me ,op. Maybe keep a diary of all the things that go well and read it when you need to boost your self esteem. Have a great day off.

[Livingtothefull]

I am going to take that advice amarmai and take a day off to just do my own thing, think I both deserve and need one. I need some space in which to just be me (whatever 'me' actually is - but there are things that interest me & that I enjoy spending my time doing so am planning a day's holiday just to do those).

Feeling slightly better today…..may be the medication starting to work, but also a project I have been managing at work has had a good outcome & this has been confirmed today. Although it is not all down to me, the fact I have been charge of it will hopefully reflect well on me….I think I deserve a little trickle of praise. The fact that I have handled it properly and it has been successful despite my feeling so terrible for so long….what the hell I think I will praise myself anyway.

[amarmai]

somehow you have to squeeze in some time for yourself ,just to do whatever-not catching up with the never ending chores. I did that thru volunteer work of my choice. I know religion can offer opportunities too. There is another thread from a woman going thru her hell and running seems to be an outlet for her.I currently like to shop for clothes that i mostly return , but i enjoy choosing them, trying them on at home and i enjoy returning and getting my money back. I also love riding my old wreck of a bike in parks and cemeteries. Cd be anything as long as it gives your mind a break from the reality of your life.

[Livingtothefull]

Thanks will try that. I am still hopeful that the ADs will start working and take this horrible fear away, let me function.

Honestly there is so much suffering that I have to just take on the chin. There are the everyday challenges of caring for DS that I won't go into at length. There is the fact that every day I see other families with young people growing up & doing the things DS will never be able to do - gaining the things that DS will never have. Just normal stuff like going out & about, having friends & boy/girlfriends, jobs & university. My nephews & nieces among them who are around DS age.

I accept all of that upset as part & parcel of having my beautiful DS. Because it is him who has the disability not me, & my job is to support and be there for him. But I really so resent not feeling stronger in myself, I don't see why I should suffer like this as well. I thought suffering was supposed to make you stronger? It isn't working out that way for me and I don't know why.

[amarmai]

why shd they anyway? Because you are a human being and all of us need help and support when life gets too much for us. Plus you are good at what you do and will get back on line and are worth investing in. Repeat a mantra such as 'i am worth it' or 'yes i can do this' or 'right now ,right here, i am able to go on' or ; 'step by step, day by day i can get thru this' or : I am worth helping because i help so many others'. A +ve self affirming mantra will interupt and turn around the -ve brain chemistry. Also writing down what you can say you are grateful for helps.

[Livingtothefull]

Thank you. I have made a GP appointment this week & will try to get some time off next week. I hope I get the time & I don't get sacked yet. The ridiculous thing is: I am good at what I do. I have a lot to offer the company I work for - in the medium to long term. But not right now.

I will try to find an adviser/mentor at work but I am not sure I can make anyone understand. And why should they anyway?

[thesandwich]

Oh living. I am so sorry. Do not feel ashamed- you are dealing with more than anyone should have to bear. Please seek support- gp/ boss/ mentor at work. Please look at headspace for some quick techniques to use in a difficult situation. Can you book a few hours off? Massage/ time out? Please please talk to someone.

[amarmai]

panic attacks are terrifying and there is one kind that 'paralyses you so you cannnot move. Your dr needs to be told and i think someone above you or HR at your work needs to understand that you are having treatment for medical problems and will need time off and other considerations ,so if you have a bad night or day ,you can go for whatever cd help e.g massage, counselling, therapy of many kinds.You need to be less independent as you cannot continue as is.

[Livingtothefull]

Thank you again, I am trying to hang in there and cope as best I can & I have googled the poem too. I just want to feel much of my life to be enjoyable & all of it to be do-able.

I had a scare at work today though…..had to deal with a v stressful situation today and have another one to face tomorrow. I was sitting in an office alone afterwards and just had some kind of what felt like a panic attack (although was worried at the time I might even be having a stroke). It was like my mind shut down, I couldn't move at all, just couldn't figure out how to stand & move my limbs, everything felt unreal.

It took me half an hour or so to come out of it & I just felt so ashamed….so many people rely on me to cope & I am not coping. I got back to my desk & nobody noticed anything which I am grateful for. How could I ever explain this to anyone at work and be understood? I am finding it really hard to concentrate on anything though so my work performance is going to suffer.

Now I am at home & said nothing to DH, it would just panic him. Nobody in rl to talk to.

I was warned that the medication might make the anxiety worse before it gets better….so maybe that's it. But I am still waiting to turn a corner & feel better & it is not happening. I can't go on like this any more.