I feel demoralised and overwhelmed.....again

[Livingtothefull]

I have posted previously under another name re my situation. My only DC (12y) is severely disabled. We have had a few upsets with DH family which are now contained if not resolved. I have suffered quite badly with depression/low self esteem issues the past year or two but am coming through this & had treatment. I also experienced bullying at work & had to leave in a hurry so found a contract role which lasts till next month. Things have lately been a little more settled.

Now, DS requires further major surgery which is scheduled at the very end of the work contract. So I won't be available for work while he convalesces though, on the plus side, at least I will be free to take care of him. But I NEED to work to keep the roof over our heads, am terrified I won't find something else. DC will deserve a wonderful Xmas and how will we pay for it?

I am studying for a PG qualification which is nearly completed...was scheduled to end January (already deferred through mitigation due to DC issues - no further deferment possible). I have to do some research within the next couple of weeks, how will I do this with all that is going on with DC? I am so worried about my poor boy.

My health has been pretty poor & I have piled on weight, have been addressing this lately by joining a gym, running when I can, doing fitness dvds at home, eating better etc. How will I do this while DC is convalescing? I know I will comfort eat and won't be able to leave the house or afford the gym. I also feel horribly guilty for working on myself like this when DC will never be able to even walk.

I don't know why I am posting here really...these issues can't be taken away but I need to somehow get though this and manage my life. I need to fight this feeling of fatalism....feeling that life/the universe etc has it in for me and will ensure that I don't succeed, that pressure will be piled onto my little family until we all break, and that I will remain on a step lower than everyone else.

[Livingtothefull]

I don't want to be a fake. I always set out to be honest.

But I don't feel that there is a place for the genuine me in the world. I feel that the genuine self would need a lot of money behind it to assert itself in the world; with money, the self is independent of anyone around it and is free to confidently articulate itself whatever way it will. Being genuine, an authentic self, is a luxury that costs money.

The genuine me (if there is such a thing) finds itself at sea. I have often been urged to 'just be myself'; but when I myself am just a little knot of fear that is desperately hoping to find a place in the world and not be utterly rejected, how much of a 'self' is there to 'be'?

I need to find a job to survive; I am desperate to find work. So when I talk to prospective employers about being 'enthusiastic' 'motivated' 'keen to contribute to the success of their business', I am telling them a very subtle lie. I am slathering on the 'caring' that I don't truly feel.

It is not that I don't care at all; but ultimately I care far more about my prosperity and that of DS than I do about theirs. I don't like lying in any context; I bring my DS up not to lie. But nobody wants to know what is going through my head at the moment.

[Livingtothefull]

I think that women are historically - and even currently railroaded into 'being' rather than 'doing'. There is this idea that a woman should be this beautiful, passive 'thing', this muse that is there to inspire, to be admired, and hopefully to have a song written about her. Whereas men are the active sex, the achievers who get on with 'doing'.

The longer I live (and I am quite old now) the more I think that there is no 'me' in me. Where I expect to find a self, there is instead a little cluster/constellation of qualities and ideas, and I get to decide which of them to heed. The 'me' is in the doing not in the being. It was just another way of denying women their true humanity, to claim they should just exist rather than be 'doers'.

I have written elsewhere about thinking that I am not me; I have been so busy saying and doing what is expected of me (from schooldays up) that I really don't know what is authentic 'me' stuff any more. So, I have decided that the 'me' is in the doing not in the being. Maybe when my life is near done I will be able to look back and find a series of positive achievements in terms of human happiness (I sincerely hope that a happy healthy and secure DS is among those fruits); so that, if anyone seeks the texture of LttF's real self, they find it there.

[Livingtothefull]

For someone like me (there are others like me) who would love to be able to hug the truth tightly to her, lying for survival is painful and hard.

[concretebox]

Hi livingtothefull,
Your son is home & so fortunate to have such a mother as you.
I'm oldish, trying to think which philosopher it was that went on about the 'authentic' life being the only one worth striving for. I should remember, did joint MA in philosophy & sociology, long ago, as a 'mature' student even then. Was an existentialist, I think.
I'm waiting for my 9 year old son to fall quiet in his room, to sleep. To switch off. His autism (aspergers) has irreparably altered everything.
Nothing in comparison to what you are facing though.

Just wanted to let you know your posts have been read.

[concretebox]

Sartre, of course, was the philosopher.

[Livingtothefull]

Thanks concretebox, I will try to read some Sartre. I want to be authentic but the reality of living seems to be all about making compromises and presenting a version of me that conforms to what is expected. I don't think that prospective employers would want to know what is really going through my mind these days. I hate this feeling that authenticity costs money; while I have a mortgage to pay and a DS to keep I have to play the game like everybody else.

I think that women are under particular pressure because it is not enough for them to do/achieve; they have to 'be' a whole lot of things as well, conform with a lot of tacked-on expectations: they have to be beautiful, slim, well dressed, 'sexy', youthful etc. And they are supposed to be multitaskers: wonderful mothers as well as successful in their careers.....they are expected to be successful in all aspects of their lives and look wonderful whilst doing it. There is nothing like the same pressure on men: nobody expects perfection from them, they are generally left to get on and do things however they see fit.

At the moment I don't think my DS feels particularly fortunate in having me as a 'D'M....not by the way he was swearing at me, screaming 'F-g bitch, f-g idiot!' at me while I was doing his exercises. I had to come downstairs to have a sob afterwards. He is still swearing at me now and demanding the ipad from me so I will need to end here for now

[sherazade]

My health has been pretty poor & I have piled on weight, have been addressing this lately by joining a gym, running when I can, doing fitness dvds at home, eating better etc. How will I do this while DC is convalescing? I know I will comfort eat and won't be able to leave the house or afford the gym. I also feel horribly guilty for working on myself like this when DC will never be able to even walk.

Sorry to hear about what you are going through. You don't have to put on weight whilst your ds is convalescing. You can exercise at home (squats, sit ups, stretching, aeroibcs, plug in the earphones and dance, jog on the spot). Don't buy or keep junk food, stock up on healthy snacks that are filling and nutritious: hummus, beans, fresh and dried fruit, olives, eggs, etc. Make a big pan of soup everyday to eat throughout the day when you get hungry, eat a good breakfast and drink plenty of water. You won't gain weight.

[monicalewinski]

I can't give you anything constructive I'm afraid, but I too just wanted to let you know that your posts have been read. You know deep down that your son does not really mean the things he is saying, he's angry and in pain and he's lashing out at the people closest to him.

Keep going, and please try not to be so hard on yourself. Fwiw, I'm not sure there are many employers that would be pleased to hear what is really going through their employees' minds - mine included!

[Livingtothefull]

Thanks sherazade, I will get into this. Try to talk me into doing some today. The only exercises I have been doing over the past few days have been my DS's. I have already stopped buying junk food and have cut back on wine drinking (had to be teetotal whilst at the hospital which helped break the habit).

It strikes me that I am a failure as a woman, in almost every respect. I am an unsuccessful DM as my DS thinks (as he never ceases to tell me) that I am a fucking bitch. If that is not an indicator of unsuccessful motherhood I don't know what is. I am an unsuccessful career woman as I am unemployed. I am getting on in years so have definitely seen better days, and as you know I am far from slim. The slimness seems to be the only thing that I have control over; maybe that is why I am latching onto it as a goal in the hope of bettering my self esteem. But as you see, currently I am failing even at this.

[concretebox]

Morning.

Carer's Allowance can be applied for online. It can also be backdated three months if qualifying conditions are met. It is a paltry amount but also counts towards a 'credit' for your pension.

www.gov.uk/carers-allowance/eligibility

If your son is already in receipt of DLA, which he certainly should be, then it is very straightforward.

As for being a 'failure of a woman' - never.

[Livingtothefull]

Thanks concrete box, I will follow up on this link. DS does indeed receive DLA but just the help with getting around, not the care component as stated. Once i put the info in online it states that i am not entitled..but maybe I am for this short period, if not for this then to something else.

[Livingtothefull]

Ok 4 phone calls later (to DLA, Carers Allowance, Jobseekers and Income Support helplines - I got passed around a lot) I have ascertained that I am not entitled to anything. Not until DS is back at school and I can claim JSA. Well at least I know. I am not sending him back to school yet, he has been complaining of pain a lot today.

So I am off now to inflict more pain on him with his leg stretches, then get him his lunch.

[Livingtothefull]

So now DS has been tortured, dosed and fed. He is looking at videos online and wonder of wonders, I actually heard him laugh. He is probably watching something unsuitable....will check on him again shortly.

Not a dicky bird yet from the community nurse who was supposed to contact us & dress the gaping holes in DS legs. This is by no means the first op he has had and we have always seemingly been left high & dry re his aftercare so I expected nothing better. I have to do everything at the moment such as move him in bed & change his incontinence pads...all v difficult to almost impossible as he is too heavy for me to lift.

I don't mean to sound so negative but I am having a very lonely day today & need to vent. I also want to get angry now as anger is better than despair. It is a very effective stand in for those times when a positive sunny attitude is unfeasible.

[Livingtothefull]

I am really struggling with this & I want to sob. I am posting in between going up & downstairs when DS wants something. He is in pain again and there is nothing I can do.

[chalkythecat]

That's tough. I'm sorry to hear about your DS.

Your DS needs you at the moment so rather than worrying about the job be grateful that you can spend time with him. I'm probably in a better financial position than you but I freelance and I ALWAYS believe I will find something else. Do not worry that there aren't many jobs out there, you only need one job and have faith that it will appear at the right time. Try to do this because honestly it does work. There have been times in the past when I have been panicking and applying for tons of jobs with no success. I think the reality was that I was just pushing everything away.

Can you get a temporary bar job for a couple of nights a week? It would keep the pennies coming in and get you out amongst other people. Both things will make you feel better.

If you're eating crap then don't keep it in the house and start eating three meals a day. End the gym membership and start doing DVDs every day. This is only temporary. You can get back on the exercise routine when you're not stuck at home with DS/back out at work.

Best of luck. You can do it!

[Livingtothefull]

I have tried unsuccessfully to sort out DS community nursing care, as his wound looks bad & he screams if I go near his dressing. I called his GP, was informed by receptionist that it is nothing to do with them despite DS being their patient.....they gave me the number to call which rings & rings then goes dead. I will try again later and if I get nowhere, think I will have to go back to the GP and demand they do something. I am afraid of what I might say though, if I call them now.

[Livingtothefull]

Last time DS came home from an op he was in a hip brace after having both hips rebuilt. He received absolutely no aftercare and developed bedsores. Our ex-neighbour who is a nurse, came in to help with his dressing in the end as she was aghast that he was receiving no help. This is actually a far less serious operation so it would not surprise me if the aftercare turns out to be useless.

[Livingtothefull]

OK I have tried the community nurse number again and it goes nowhere so called GP again to explain this. They reiterated that his aftercare was nothing to do with them, I said that I found that assertion bizarre given that DS was their patient and had been since birth. So I should be getting a call from the doctor shortly.

There is obviously some politics going on....but that is not my concern, I just want some proper care for my DS & I don't care who provides it.

[Livingtothefull]

Nothing from the GP or community nurse as yet....if they don't call back then DH is going to call them tomorrow. He can be a Rottweiler when he wants to be so god help them.

[Flappingandflying]

This is ridiculous. If your son is incontinent then you should be receiving care component of DLa. You can claim carers allowance if you work less than 16 hours. You should also register with your GP as a primary carer so that they call SS should something happen to you. If this is a long standing disability then he may be eligible for social care package. Contact ss and see. Barnados are really good, as are Action For Children and other charities. I find it difficult to comprehend that a child is home from a major op with nothing put in place for tbe district nurse to call for dressings, etc.
really pleased that he's doing well. Your husbands work needs to look at tbe disabi'ity discrimination act.
Is there any way you can contact the surgeon who did the op. i'm sure they won't be impressed with this lack of service from the surgery.

[Livingtothefull]

Thanks so much Flapping, your post is extremely helpful. It is news to me that DS should receive the Care component due to being incontinent so will definitely follow up on that.

The GP called in the meantime...gave me another number for the community nurse but it is invalid so am trying to call them back. I have also got a prescription for stronger painkillers faxed to a local chemist so can follow up & get it.

Thanks again.

[Livingtothefull]

And I am sorry concretebox for not acknowledging your situation with your DS which you have shared here. Autism/asbergers is a very different condition again as I am aware through several of the children at DS school who have this. Having a DC with special needs changes your life, permanently & forever......my DS is going through a particularly tough time at present but I know better times will eventually come.

[Livingtothefull]

I need to have my DS seen by the district nurse to have his dressings changed etc. If this doesn't happen, yes I will be going back to the surgeon tomorrow.

[Livingtothefull]

I know I am just talking to myself at present but....onwards and (sort of) upwards

Tomorrow I have to call the surgery and try to get them to arrange a visit from the district nurse. I will try to get my sweet baby boy out of bed and on the sofa downstairs so they can see him there and change his dressings.

This evening I have been listening to music, wanting inspiration and a reminder that life is sweet.

I have lost contact with friends...have felt that there is nothing I want to say so best to say nothing. I will try to reconnect with people again from tomorrow. I am scared to talk to them, I hope they forgive me.

[Livingtothefull]

Here I am again, embroiled in an evening that I don't want to become tomorrow. Tomorrow has a habit of turning itself into another, utterly ghastly day.