I don't want to lose heart now but I'm scared I might

[Livingtothefull]

Here is what I have to contend with:

My DS is both physically and mentally disabled; I have to do everything for him - feeding, toileting etc. It doesn't sound like much but I tell you it takes its toll. I adore DS but it isn't him I struggle with but the work that goes with him. I am fortunate that DH does as much as me in caring for him if not more.

I am estranged from my family. Something happened recently which made me feel that DS was not welcome at family events. I feel that DS should be at the centre of things - that the first thing anyone in the family should do is say to us: 'We want you and DS to be there. What do you want us to do to help you make that happen?' But I never get this; I always feel that DS is an afterthought. That makes me very sad.

I have a physical condition (epilepsy) and a mental health condition (depression). I feel that the stress of the life I am living contributes to these conditions. I had a bit of a meltdown at work this week; I think that it was a seizure but it could also have been a panic attack, maybe both. I just couldn't articulate what I wanted to say and I feel that my boss didn't understand what was going on and that I had let him down. I don't know what is happening to me, I couldn't concentrate. My brain turns to mush when I am stressed.

I have arranged to see the doctor on Monday to try to get help with all this; I hope he doesn't recommend counselling because what is there to talk about? I have booked holiday for that day then I have to go back to work on Tuesday.

I am DREADING DREADING going to work then. I don't like living with that dread but I feel that I have let everyone down; my family, my manager, my team - by being unable to hold down a job. I could lose my job now, it is a senior role and the way I have acted is not good enough. I have worked so hard to get a professional career and I am failing.

For the first time ever this week I thought about doing away with myself. Just dropping of a tall building (the one I work in is quite a tall one). Oh but I just cant; I can NEVER leave my DS, I am here for him and will stay here. But where does that leave me? Suffering and awaiting more guilt and shame next week.

That’s an huge amount of very hard things to be coping with.

The thing that jumps out of your post is that you’re blaming yourself. You’ve been dealt some very hard cards which are entirely not your fault, and you have shown huge resilience in coping.
Please don’t dismiss counselling.
What there is to talk about is coping strategies, and just general off-loading. It was a therapist who noticed that I was blaming myself for things that were out of my control, and explained to me that that was a fast route to depression. I hadn’t realised that was what I was doing. The only problem is that the NHS generally has long waiting lists. But at a minimum your GP could sign you off for a decent period so that you can rest and catch up with yourself.
If you can get counselling or phone a helpline, you can talk about the “guilt and shame” you’re feeling. Those are corrosive feelings and judgements of yourself that will be making things much harder for you.

OP, I could have wrote this post word for word,today and everyday since my son was diagnosed with his disability which has left him a hundred percent reliant on me.what you need to hear is that you are doing great coping in situations others might fail in,you may feel like a failure and think terribly of yourself for wishing to die but its completely normal.we have a fight or flight reaction to extreme stress .most days my friend you are fighting it's ok to have moments of flight.my way of coping is taking it that very minute you are in one at a time and focusing just on that. Forget everyone else who doesn't support you or your son you got this.youve always had it .you've looked after him since he was in your tummy.he may be an uncomfortable person for others but hes your world. And I'd bet my life your his.carry on my friend better days will come
.much love

The last thing you should feel is guilt and shame.
You are managing very difficult stuff both for yourself and your dc.
You are seeking additional help when needed and you are doing all this while also working outside the home.
You are honestly a super star even if you don't feel like one at the moment.

I am really sorry you are struggling OP. There is no shame on that though, especially if you have no outside support.

How old is your DS?

You say it doesn’t sound like you do much for your son but it does. Many people would not work in your position and you’re trying to do both and a high flying career at that. I bet you’re trying to organise everything for Christmas at the moment too. You have an awful lot on your plate, be kind to yourself

Yes be kind to yourself. The thing about having a disabled child is we can make it look "easy" so people don't see the difficulties. My sister was suggesting we do a particular thing once but just could not see that with our disabled child (learning difficulties) it would be very tricky. Unfortunately your family will probably never put your child first - people can be very selfish.

How old us DS?
Do you get any respite? Can you pay for some help?
Is your depression being treated?
Could you take some AL just to get over the next few weeks?

Massive hug

hopeishere, what OP is describing - depression plus a possible seizure/anxiety attack - merits being signed off sick, not using up precious AL.

Thank you all SO much. I have felt so afraid that I have let myself down. I had been doing well in my job, had had lots of positive feedback, and now this. I am so scared I am going to lose my job over this (less than 2 years service). But if I can't stand up for myself and be my own best advocate then who will be?

DS has severe learning difficulties and is in a wheelchair btw. I think that you are right hopeishere that those around us tend to assume that it is easy when it is often so hard. So we get things like family events being arranged between the rest of them and then we get invited.

For example on a recent weekend away, the rest of them were raving about the beautiful comfortable hotel we were staying in; whereas we found it all a bit of a struggle staying in an annexe of the hotel and coping with a pull-up bed, and walking all the way round to the main building where the only accessible entrance was.

There is a lot of tokenism everywhere with regard to the disabled. DS has to wear knee high leg splints to stop his legs getting crooked....he needs to wear knee high socks for comfort which can be hard to find. We have bought them from one place for years, however the latest ones I have bought are a lot shorter....I presume that they have changed suppliers and as the socks are shorter they are cheaper.

Of course I can complain; but does anyone think it will make any difference and that anyone will care that a disabled person relied on some small thing that they can no longer use?

Your employers obviously value you and (unless they are monsters) will be concerned about you, not looking to get rid of you! Being signed off, if necessary, is not a reason to lose your job (especially as it’s clear you’re not on zero hours for some hideous delivery company, for example.)

I would definitely contact the socks company and explain. They may or may not be able to help, but worth a try. Many, many people would care about that. If they can’t help post your sock requirements here and I bet someone can source them.

I know that @AuntyElle but if you're worried about your job and reliant on the income then AL can seem a better option than sick leave. Some companies frown on being sick unfortunately.

I don't want to take sick leave unless I absolutely have to; but on the other hand I would rather be off sick than having meltdowns at work. I am in a fairly senior role & I just can't afford to look incompetent there.

I am seeing the doctor tomorrow so will see what comes of that. I also have some AL left so that may be an answer.

I will consider complaining to the sock company but what I have learned is that I need to pick my battles. DS needs the smallest size of mens socks and they need to be knee length and quite fine; which rules out most sports socks.

Thank you so much for your post WhatAMum01 and love to you too. I think focusing on the moment is a great strategy; will try to do that and enjoy being with my boy today as he is sat on the sofa opposite me and looks at his iPad. He is such a happy boy, the happiest person I know. Isn't that crazy?

I know it is the same for many of us. We heard from the mother of a friend of DS apologising for not being able to bring her DD for a recent social event organised for special needs young people; because her DD had been up all night and so she hadn't slept at all and was just too tired to bring her.

Most parents have a few short years of their DC being dependent on them and of suffering sleep deprivation etc. We have it for life. And I worry about my DS future in a world that so often seems indifferent to his needs.

When I say 'pick my battles' I mean there are regularly things to take issue with....eg our local bus station was renovated and it was announced that it was open. But the lifts weren't installed yet so what they meant was that it was open to everyone except disabled people.

To me if disabled people can't access the bus station then it isn't open. And I complained about that - it didn't change anything of course. So I feel (irrationally) guilty that I haven't been able to change things for the better for my boy.

However irrational the guilt feeling may be it feels real enough to me. So how do I go into work on Tuesday and hold my own, refuse to be made to feel bad about what I have done?

I totally get what you mean about picking your battles when there are so many, and often with no useful outcome.

“So how do I go into work on Tuesday and hold my own, refuse to be made to feel bad about what I have done?”

First, try to postpone worrying about Tuesday and work until you have seen your doctor. One day at a time, and tomorrow is for your GP appointment.

Secondly, who do you think is going to try to make you feel bad? You didn’t “do” anything bad, you became unwell whilst at work. Most people do at some point, in a myriad of different ways. If it helps, you could ask your GP for a letter?

Something in your posts made me think of this book which I found very useful:

www.amazon.co.uk/Reality-Slap-Russ-Harris/dp/1780332025?tag=mumsnetforu03-21

Thank you for that link AuntyElle, I will definitely check that book out.

@Livingtothefull, @WhatAMum01, I tick the same boxes and it's really really hard
No family on my side and dp's effectively disowned me and dc, blaming me for wanting children.
I also can't relate to counselling idea as no one will ever understand unless they are in a similar position and I don't like the idea of "offloading" to strangers who at best just nod.
What keeps me going is wanting to outlive my dc so I have become even more risk averse than I have ever been.
How I ever worked full time through most of his childhood it's hard even for me to believe now.

OP, yes, see the Dr and take time off if needed, but I found that work has kept me sane. I never even disclosed full extent of my dc condition because I felt it would be a disadvantage and
When you return, you can say that you were going through a bad patch maybe without going into too much detail. Some companies do take mental health seriously now.

It would be amazing to connect with you and others in the same boat on SN board and keep each other going.

Thank you YogaLite and I am sorry you have had a hard time too. I can identify with really valuing work and that is why it is really hard to take that my situation is affecting my mental health and undermining me at work. I hope that my employer is supportive and acknowledges that though going through a bad patch now I am in it for the long term and actually stronger than many people.

I am ambivalent about counselling; on the one hand anything that makes it easier to cope is to be welcomed, however I feel I need concrete and practical things; like plentiful affordable care, a disabled-friendly environment and rock solid enforced rights at work. In short; I can fix myself as far as it is helpful but it is the outside world that needs fixing too.

It actually gets harder, not easier, as DS gets older (he is 18 now) and the personal care aspects get more physically challenging. He also has behavioural problems associated with being a child in an adult's body; sometimes it is downright dangerous, both for him and for us.

I relate to your problems @Livingtothefull, mine is in early 20s and has both physical and learning difficulties.

Yes, I agree, talking about it is not practical enough, I also find it hard to imagine that any carer would have enough empathy to take on board all we are dealing with on a longer term basis.

Yes, they would provide physical support but I can't imagine they would provide or even want to provide much emotional support.

Keep going my friend, a day at the time..

Thank you YogaLite, and yes I will keep going on (as I know you will too). Some days, it seems that putting one foot in front of the other is ALL there is.

It is unreasonable to expect others to understand, when they have no first hand experience. But I do ask that they respect what I have to deal with; not be 'judgy' and give me physical support when they can. Also, the best way they can show they value me is by valuing my boy.

I am having a bit of a crisis this morning....have just helped get DS ready for his day and he has left now, will be going to the doctor soon.

I am really worried I am having a nervous breakdown, I can't think straight at all. Something family-related happened over the weekend which made me realised how estranged I am. DH family are causing grief as well; a lot of politics relating to Christmas mainly.

I don't know how I am going to work tomorrow. I really don't know how the doctor can help with this. As stated above, I feel there is nothing left for me but to keep on going albeit badly.

Virtual hug

I had dreadful dreadful times in the past, in some way and looking retrospectively, switching thinking away from what could have been in terms of family life helped slightly - sort of ignoring them how they ignored me/us.

Thinking of you!

Have you considered apply for self directed support for DS in your home. You access this through social services it may help to take the strain off you? There is no shame in asking for a help, we done it with my grandfather and my grandmother is doing alot better because she isn't trying to do it alone.

Maybe you need a mental health break from work. I had to do it last year and my work understood . They can't sack you because of it, they should consider it like a physical illness. It is ok to admit you are struggling and I found that when I did it helped alot.

Also self directed support or ILF support wouldn't mean leaving your son it would probably be a couple of hours with a community worker and he would still be in your home or it could be someone taking him to a social club or day services. If you are both happy at home and there aren't any major issues then I doubt they would want to change that.

Can you ask for the dr to sign you off for some space? And refer you to counselling. I know you’re unsure as to how it will help or even if it can- but I am confident that it could. That space to offload helps you sort your own head out- you say you want advice etc but I can assure you that YOU know your life best and you will have many of the answers right there and counselling can help you let go of the old feelings anchoring you down and understand lots of things about yourself and your family etc that you perhaps are aware of on one level but haven’t really addressed. I hope that makes sense.
You are an incredibly strong woman and I can see that from just the things you’ve written here but you don’t see it yourself and you weaken yourself by your self doubt and lack of self care. You can’t keep giving out of a bottomless well- you need to find ways to fill up your own reservoir as you are needed and you are worth it.