I feel demoralised and overwhelmed.....agai n

(128 Posts)
Livingtothefull Fri 25-Oct-13 12:25:35

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.

Whereisegg Fri 25-Oct-13 13:04:32

Can you get an evening/weekend job for when DH is around to look after ds?
This will help with cash, get you out of the house, be great for getting some adult conversation and even help you with being active if something like bar work.

I would cancel the gym tbh, you will save money and there is so much available on YouTube in the way of workouts.

Sort out an Internet delivery.
Limited/no chocolates/cakes/crisps and just re-order every week.

There is lots you can do in the house with no equipment to be more active.
Take things upstairs one at a time as quickly as you can.
Do pelvic floor exercises while the kettle boils.
Push ups for the duration of advert breaks.
Sit ups while the toast is cooking.
Planking while you watch the weather.

Lots of luck for you and your family op.

Firsttimer7259 Fri 25-Oct-13 13:23:09

Hi you have a lot on your plate right now and I'd suggest you repost on the special needs board - many people there have first hand experience of problems like this. It's incredibly hard to manage family and personal needs alongside a disabled child's needs. Don't lose focus on looking after yourself - ypu can't help them if you are going to pieces getting fit dealing with comfort eating are part if a strategy to be well enough to be a carer which is physically and emotionally v demanding. It's not selfish it's sensible.

Could you contact an advocacy agency to help you plan and access any resources that could help you through the time around his surgery? Make sure you are claiming every benefit ypu can - possibly your situation means you could access social fund payments. Things like homestart have helped us get through hard times providing support and advice and practical help - my dd and eh7 are disabled

Whereisegg Fri 25-Oct-13 16:21:13

Urgh I've just realised after that reply just how insensitive my post seems.

Some very good advice above op, regarding home start.

I was hoping to make you feel you didn't have to lose sight of things you feel you want to do in the face of such a difficult situation, but I appreciate my post seems quite insensitive. Sorry.

Livingtothefull Fri 25-Oct-13 17:18:44

Thank you both for your responses. Whereisegg: no don't worry I didn't perceive your post as insensitive, you have some good ideas about maximising time/saving money. I probably will cancel the gym if I don't get another job quickly...only joined because I had discounted membership through work.

Firsttimer - I have asked for this to be moved to the special needs board as suggested. We are fairly clued up re benefits but will check to see if our situation entitlems us to more.

It is so stressful and difficult prioritising my own well being, the trouble is that when I am under pressure/feeling down I am so tempted to comfort eat and find exercising too much trouble. It is as though I lose sight of how much I want to improve my health, ie what I really care about - just look for comfort where I can. I do drink too much too these days - not enough to get raging drunk (especially when in charge of DC) but enough to be bad for my health. I feel that I work hard, have a lot of stress etc and deserve my evenings sitting by the fire with a glass of wine. The trouble is, it is never just one.

So: how to stop comfort eating/drinking where there is little other comfort to be had?

Latara Fri 25-Oct-13 18:58:06

Stopping comfort eating is difficult (I'm trying hard to do this at present).

A dietician suggested CBT for this and it's worked a bit - basically it's about working out the cause for your comfort eating and replacing the comfort eating with other activities that are rewarding, even just sorting out the home.

I've found that swapping my 'comfort' foods of chocolate and sweets for fruit and veg has helped me lose weight but yes I still binge on the fruit and veg which is expensive - i'm trying to make a cup of tea for example when I want a binge, then clean my teeth or eat minty chewing gum.

With alcohol you could go extreme and just not keep it in the house, or you could try having for example a wine spritzer instead of a glass of wine.

Hope that gives you some ideas for the comfort eating and drinking.

Firsttimer7259 Sun 27-Oct-13 08:53:42

Hi again - I know what you mean about comfort eating - I backslide each time my dd has a period of sleeping badly, I eat when I'm sleep deprived. No solutions for you - I try to go easy on myself and nor be harsh about it. I also try for some rules tp minimise the damage: not more than x amount pf wine/ chocolate. Not great but better than what I'd do otherwise. I find if I'm too strict then I have a binge and feel awful after.
I have found advocacy agencies useful - get them to do paperwork and think about how I could get help. Our church also pitches in providing childcare support etc I don't know if you have any network of people who could find ways pf helping drop off a meal, look after children anything. I gpvfor counselling regularly which helps me have a chance to offload and discuss my problems and feelings which helps

theoriginalandbestrookie Sun 27-Oct-13 09:41:09

Living I recognise you from previous threads, sorry to hear things are hard at the minute.

I'd try to work out what is most concerning. You said that you won't have enough to pay the mortgage - is this correct? Can you manage on your DH's salary until the NY? Are there any household economies you can make?
I see you are a contractor - most companies tend to do a lot of recruiting in January, so if this is a short term gap then perhaps you could just focus on getting your CV ready for that period.

Also it is a good thing that you are not working whilst your DS is convalescing. It would be impossible for you to try to work whilst doing this, at least this way the burden is not so great for both you and your DH.

On the fitness/weight side. Do not feel guilty about trying to keep yourself healthy by comparing yourself to your DS. You and your DH need to be well to look after him and that is what you are trying to do by keeping fit. Could you squeeze in runs before or after your DH is away for work? As regards to the wine, presumably you are on anti ds, if possible I would recommend giving it the boot. It will do loads for your fitness and also your long term self esteem. Now you will be at home you have time to plan healthy meals - try to make that into an enjoyable act, not a challenge.

For your research - how much time do you need to do it? Could you just remove yourself to a library for a few hours at the weekend. Ideally you would postpone this course, but I know this is your last option.

Have you reviewed your meds recently with your doctor? Sorry this may be too personal a question, but on the last threads you had started to sound much more positive, but now it seems as if life is overwhelming you again - with good reason I have to say. No harm in taking a trip there - perhaps they may be able to recommend some counselling for you.

Good luck - I do think of you from time to time, from the other threads you had posted.

raisah Sun 27-Oct-13 14:40:56

http://www.home-start.org.uk/

http://www.moneysavingexpert.com/family/

I hope you find a way to work things out. One thing I will say is do contact home start as they can put you in touch with a volunteer who can provide respite care for a few hpurs. I haven't read your previous posts so please ignore my suggestions if they are not relevant to you.

Is it possible to organise a babysitting rota with friends/family so that you get a few hours study time a week/day. You can still be at home but not directly caring for your child.

You mentioned in ypur op that you are clued up re benefits but I have includes link for Martin Lewis website in case there is anything else you can claim.
Are you able to survive on your dh wage until Jan? Do the budget calculator on the website and see if its possible.

raisah Sun 27-Oct-13 14:42:32
Mummyoftheyear Sun 27-Oct-13 17:02:56

There's an organisation called Overeaters Anonymous. It's a support group with thousands of members all over the country. Started in America. Have a google and I'm sure you'll find the number. They can tell you of a group that meets near you. It'll help with the comfort eating and will be a great support to you.

ceebie Mon 28-Oct-13 12:17:21

You are doing incredibly well, and you need to start reminding yourself of that. And do you know what? You WILL manage. You've proven you can so far, and you will continue to do so. Who cares if sometimes there are some steps backwards before there are steps forwards? If a bit of weight goes on, don't beat yourself up about it; you'll get rid again when you have the time. Focus on your priorities. I do think you need some support and some activity that is your own - not necessarily formal support - it could be going out for a glass of wine with a friend on a Friday evening, joining a club (book club / knitting / bungy-jumping / running / church / whatever takes your fancy), or just whatever works for you. At least one hour per week that is your own time is vital - do you have that at the moment?

ceebie Mon 28-Oct-13 12:20:01

oh, sorry, missed the bit in your second post about wanting to cut back on wine! Well, perhaps not that then. Or make a Friday night out your only glass (or two) for the week.

Livingtothefull Wed 30-Oct-13 20:36:01

Thank you all...just managed to get back to this thread, it has been hectic!

I am still working in my contract role.....am trying to do a decent job but to be honest just want it to be over so I can move on. Feel massively guilty because my heart is not in it. I just want DS op to be over with now so he can start to recover & we can return to normal. I am finding it difficult also to concentrate on my studies the way I should.

I think the stress is getting to me more than I know...feel literally nauseous with stress, I nearly threw up this morning. I am scared that I will never find another job.

I am still jobhunting but am being upfront about not being available for interview the next couple of weeks and the reasons why. Yes I could survive to New Year on DH salary and our savings but it means a frugal Xmas..would love to be able to spoil DS.

Re fitness, I have been getting up at 6am to work out before DS carer gets here (during his half term) and trying to get to the gym in the evening. What I will do after his op is anyone's guess, I will be camping out at the hospital then confined to home all day (DS will be encased in plaster). So for the short term there will be no time of my own at all, though will try to carve some out when DS is better & back at school.

Thanks all for the links...am following up on all of those.

Yes I am sure I will cope somehow for my little boy's sake. The reason I did not post on the Special Needs site is that I think i am like any other mother, many of us are trying to juggle responsibilities/problems and make the best of things. I do post there when it is a specific issue regarding SN where specialised advice is needed. But I want to feel that I am a normal mother too.

Livingtothefull Sun 03-Nov-13 23:12:55

I am going to sound dreadfully pretentious here and state that this week I am going into the vortex of pain and suffering. Whatever suffering I have to face is nothing compared to what my dear darling DS has to go through. If you were ever to meet him, it would melt your heart to think that a boy like him should suffer. He just loves his life. I wish that life would do a better job of loving him back.

Anyway he has to have surgery which involves (sorry to be graphic) having his legs sliced open in more than one place, and not for the first time. He will not be more disfigured than he is already; they will just cut into the old scars. I suppose in a way it will be a good thing that I am unemployed; I can look after DS once he is out of hospital.

I can't in all conscience claim 'job seekers allowance' because I won't be available to jobseek. I am looking into what other help I may be entitled to....hopefully some.

This weekend we spent money we haven't got really, taking our DS for a luxury hotel break. What the hell.....hell is in our lives anyway, introducing a little more won't make much difference. DS got to stay in a posh hotel and be called 'sir' for the first time in his life.

Please please please...if you are the praying kind, pray for my dear DS this week. He has to go into hospital this Wednesday and be operated on Thursday. I don't want Wednesday to ever come, I want to put off tomorrow by prolonging today.

Mummyoftheyear Tue 05-Nov-13 02:39:20

Living, I wish your DS well through the operation. I hope it's a wonderful success and that, in time, he feels better for it.

Livingtothefull Tue 05-Nov-13 06:17:48

Thanks so much Mummyoftheyear, yes I am hanging on to the hope that if we can just get through this gruelling time there will be a happier future ahead for DS and us.

foslady Tue 05-Nov-13 07:21:14

Just as there have been great times in your life that have gone, so do the bad and sad ones. You are an immensly strong woman OP and we all believe in you.
Sending my love and prayers for all of you

Livingtothefull Tue 05-Nov-13 09:24:50

Thanks foslady, that means a lot. I will need to continue to be strong to support my boy. We are off to the hospital tomorrow & I will be staying over with him.

Last day at work today so feel emotional anyway, my head is so full. I got a nice email from my DB this morning so that was a good surprise. I don't want to say goodbye to many people here, just want to slip away....is that bad/antisocial of me?

theoriginalandbestrookie Tue 05-Nov-13 09:35:49

I just wanted to send you good thoughts in this difficult time, very best wishes for today and tomorrow and I hope with all my heart that the operation goes well for your DS.

Hi Living, I'll be thinking of you and your son tomorrow, I hope everything goes well. Be kind to yourself. There's only so much you can do right now. If you can't work, you can't work, and worrying about it won't change that. Try not to think about the presents you can't buy, but the fact that your son will get to spend two whole months with his mum around all the time, which will surely make him happy too.

I know it's a horrible cliche but I have honestly found that it's always darkest before the dawn -- things are tough now but they WILL get better, so you just need to hang on through this patch. Good luck thanks

Livingtothefull Fri 08-Nov-13 17:18:51

Thank you all for your kind and wise messages, they help a lot.

Well DS has had his op and it has gone OK. We were worried because we were told he was out of theatre but then for a long time heard nothing more. We were panicking because the last time he had an op he took a long time to come around and for a little while we thought he might not pull through..so we have bad memories of that and were petrified the same thing was happening again. I went to a private room to sob so didn't do it in front of DH....thank god though DS is OK.

I am just home now & feel so guilty I am not at the hospital with DS....feel it is my place to be with him (spent last night & the previous one with him, DH is with him tonight). I had the fond idea that I would fit in trips to the gym, calls to job agencies etc round my time at the hospital, but I'm afraid I am not doing any of that.

DS is his wonderful, feisty self though more subdued than usual....can't bore you by detailing all the trouble & pain he has gone/is going through, but he has come through it all so wonderfully and I am in awe of my little boy.

theoriginalandbestrookie Fri 08-Nov-13 19:46:03

I'm so pleased the op went well Living, I have been thinking about you.

Your place is absolutely at his side right now, or catching up on rest when your DH is there.

Do what you think is right, don't worry about job agencies, gym trips etc. Just for now, be kind to yourself and allow yourself to focus on the here and now.

ceebie Mon 11-Nov-13 13:13:36

So glad to hear the op went well. And it's over now, so you can look forward to things getting better and better for him now! How long will he be in hospital for?

Don't feel guilty about the gym / job applications for the moment. You have other priorities right now, you will find time for these things soon enough.

Don't forget that Christmas doesn't have to be expensive to be good. If you're crafty, perhaps you could make loads of colourful decorations? Think up loads of games to play with DS? How old is your DS? Presents don't always have to be expensive to be good.

Anyway, love to you and your brave DS.

Livingtothefull Tue 12-Nov-13 19:44:45

Hi there, thanks for your messages and good wishes.

Well DS is home again today.....got him home in an ambulance.

He is in a fair amount of pain, has to wear surgical gaiters all day/night. I have to do physiotherapy exercises with him several times a day...they are very painful for him, he swears at me & calls me all the names under the sun whilst doing them. It upsets me that he is seeing me as the 'enemy' in making him do these things that are painful for him.

You are right of course that DS care is my first (only?) priority at the moment & everything else will have to wait. I had a recruitment company ring me whilst in the ambulance with my DS, insisting on a telephone interview that same afternoon. No it couldn't wait until tomorrow, even though I explained to her what was going on/where I was. At the moment employers act as though they have their pick of people & maybe they are right.

Getting him exercised, cleaned (he is incontinent), ready for bed tonight took all my & DH's strength. It does not help that DH employer does not seem to be very supportive....they are insisting that DH work all the time back he has taken out to care for DS, apart from the days he took as vacation when DS had his op. This will mean him working a 10 hour day tomorrow, on top of what he has on his plate with DS care. He is sitting opposite me absolutely shattered, we are both feeling drained. DS is upstairs still swearing. What joy.

You are right that I have to get through this and better times will come. So I am gritting my teeth in readiness to get on with it.

Livingtothefull Tue 12-Nov-13 23:44:29

I am trying to be confident but really need handholding. Our lives at the moment are just indescribable....don't want to seem hard on people but some of those close to us are really not understanding what we are going through. I realise that I have just lost track of the idea that life can be positive, pleasant.....it is an ordeal for me because it is for my DS. Some family members have been really disappointing in their response to this (not all..others on both sides have been very supportive). But to all practical purposes we are on our own in finding a way to deal with this.....however supportive many may be, they have their own families/issues to deal with.

I am scared to go to bed now. This is a habit of mine. I want today to last as long as possible before it becomes tomorrow. Tomorrow I have to torture my DS anew...it is to help his recovery but he doesn't know that, he hates me because I hurt him.

After torturing my DS, I have to put my student hat on and follow up with my tutor re my studies (I am weeks overdue with this - feel so guilty over my tardiness which puts me off even more) then put my jobseeker hat on & try to find something before we run out of money. I can't claim Jobseekers Allowance because I am not available for work while DS is ill, yet can't find out if I am entitled to anything else (Carer's Allowance?) Nobody seems to know.

I have all this 'stuff on my plate' to deal with, feel totally inadequate and unequal to it. I wish something could happen to make me feel better about myself. My life's purpose now is to care for DS and I could do this better if only I felt stronger.

Livingtothefull Wed 13-Nov-13 00:24:05

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 Wed 13-Nov-13 00:45:05

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 Wed 13-Nov-13 01:11:20

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 Wed 13-Nov-13 01:41:01

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 Wed 13-Nov-13 01:45:21

Sartre, of course, was the philosopher.

Livingtothefull Wed 13-Nov-13 09:17:16

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 Wed 13-Nov-13 09:25:55

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 Wed 13-Nov-13 09:34:44

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 Wed 13-Nov-13 09:49:37

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 Wed 13-Nov-13 10:41:25

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.

https://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 Wed 13-Nov-13 10:51:12

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 Wed 13-Nov-13 12:32:01

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 Wed 13-Nov-13 14:20:27

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 Wed 13-Nov-13 14:35:34

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 Wed 13-Nov-13 14:42:04

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 Wed 13-Nov-13 15:46:10

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 Wed 13-Nov-13 15:50:43

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 Wed 13-Nov-13 16:22:53

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 Wed 13-Nov-13 17:50:00

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 Wed 13-Nov-13 18:07:27

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 Wed 13-Nov-13 18:18:49

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 Wed 13-Nov-13 19:20:42

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 Wed 13-Nov-13 19:23:12

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 Wed 13-Nov-13 23:09:04

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 Wed 13-Nov-13 23:15:28

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.

Livingtothefull Wed 13-Nov-13 23:17:30

On reflection I think I would prefer to pass on both the onwards and the upwards

Nanny0gg Wed 13-Nov-13 23:47:59

Just to say that I think you're doing an amazing job - please stop being so hard on yourself.

And your friends most certainly have nothing to 'forgive'.
Where are they for you? Why aren't they rallying round doing all the practical things they can to relieve your day-to-day burdens?

Please - be kind to yourself; you deserve it.

Livingtothefull Thu 14-Nov-13 00:02:53

Thanks NannyOgg, my friends (I hope not my ex friends) have to work and bring up their own DC. So they can't be there for me. I hope my Dsis will visit me at the weekend. I do the best job I know how to do - which is not quite the same as 'the best job I can'. Nothing could ever be good enough for my sweet darling DS.

Livingtothefull Thu 14-Nov-13 00:08:36

What I mean is, I don't mean to be hard on myself but I feel that my DS deserves the very very best. And whatever I am, I am well short of the best. The fact that I am sitting here weeping and drinking wine is proof of that; this is not how a superior person (of the kind DS deserves) would behave. My poor DS with all he has to contend with, is saddled with this travesty of a 'D'M.

Livingtothefull Thu 14-Nov-13 00:30:22

I will go to bed now and tomorrow will take care of my DS. This situation has just done for me; there are things involved in DS care which, out of respect for my DS dignity, I can't describe here; but I can't believe and I struggle to accept what my sweet boy has had/is having to go through. Nothing I have had to suffer is of any significance in comparison to this. I don't really know why I am ranting on here.

Livingtothefull Thu 14-Nov-13 00:37:09

I am not going to make any grandiose threats about being at the end of my tether and what I might do as a consequence. For my DS sake I will do nothing. I will use the freedom rattling around in the mind/soul (periodically spilling over onto the page) to gather together the horribleness of life so that at least it is all in a bundle separate from me & I have a little sliver of space from it.

Glenshee Thu 14-Nov-13 00:41:15

"I also feel horribly guilty for working on myself like this when DC will never be able to even walk." - Have you ever heard of Team Hoyd?

bunchoffives Thu 14-Nov-13 01:29:29

Living I'm so sorry your DS is going through all this and you and your DH.

Hang on in there, it will get better. PM me if you'd like a rl listening ear.

I know money is important but i'd put all other concerns aside this week and just focus on DS and yourself.

Hope your DH gives the GP effing HELL tomorrow. Who the feck do GPs think they are, if not the people responsible for the medical care of their patients?

Hope you and DS get a decent night's sleep. x

Livingtothefull Thu 14-Nov-13 16:54:27

Thanks. I know that better times have to come & at the moment I just need to get on and do what I have to do. And feeling guilty about not sharing DS restrictions is pointless, yes my role is to support DS and fight his corner and anything that makes me more effective at that (such as being physically fit and well) is good.

DS seems a little more settled today, maybe his new painkillers are kicking in. I got the district nurse number in the end - GP gave us a new number but again it was the wrong one, it was the paediatric nursing team that we needed. They were meant to have had a referral from the GP but it turns out this had not been done....so I had to explain that he needed to be seen today regardless, as his dressings had not been changed for a week.

When the nurse came she had no info about what surgery DS had had so I showed her his discharge papers. Some of his dressings are changed and she is coming back on Monday to do the rest....so, no school for him (which means no jobhunting for me) at least till them. She confirmed what I already thought, that he is not fit yet to be back at school.

Livingtothefull Thu 14-Nov-13 16:57:56

DH wants to have it out with the GP surgery but I want to keep them on side at least till this is all over.

bunchoffives Thu 14-Nov-13 19:08:24

So glad your DS is more settled. And that you are now on the district nurses' radar. Your DS is lucky to have such conscientious and capable parents.

Put the jobhunting aside for the weekend and try to relax, you sound like you need a bit of love and care yourself. Could you and DH spell each other for a morning/afternoon break?

I think you are wise not to have a full-on rant at GP at this juncture, but I can certainly understand your frustration. Their uselessness is the last thing you need. Perhaps have a one more strike policy?

Livingtothefull Thu 14-Nov-13 19:19:20

Thanks bunchoffives for your message, I think that DH and I are doing what any decent parents would want to do given these circumstances. Yes the GP surgery have been disappointing...I am really aggravated by the fact that they claimed that DS care was 'nothing to do with them'; apparently (as has been explained to us) they hold the purse strings re DS which is why it all has to go via them. But I just don't have the energy at this time to pick a fight with them.

Livingtothefull Thu 14-Nov-13 19:21:25

And yes I am planning to have a break at the weekend and give DH the same. I may even go out running!

Livingtothefull Thu 14-Nov-13 23:19:38

Again I am just talking to myself but.....I had to wash DS this evening & do his leg exercises, it hurt him so he said that I am a fucking bitch, a fucking idiot and that I should fuck off. I love my sweet baby boy, I wish he didn't think that of me. I know that he is just lashing out, but am not sure he will ever understand why I have to hurt him.

Livingtothefull Fri 15-Nov-13 00:31:35

So I have to go to bed now so I can care for my poor dear baby tomorrow.

theoriginalandbestrookie Fri 15-Nov-13 12:33:33

Livingtothefull - one thing that has consistently shone out from your posts and in your previous incarnation, is the overwhelming love you have for your DS.

You sounds like a wonderful mother lioness - fighting to get the best for her cub( scuse the dreadful mental imagery). Your DS is lashing out because he is in pain and because he feels secure enough of your love to be able to do so, oh and because life is sometimes far from fair.

I hope you get the support you need for your DS and do go for a run - but only if it makes you feel better, not in a punitive I must go for a run way.

Livingtothefull Fri 15-Nov-13 15:13:05

Thank you original for your kind words. Yes I adore DS and I am proud of us (me & DH) doing what we can to fight for him. I do think though that we are not exceptional, most parents posting here would do the same for their DC. We are just ordinary people dealing with an extremely challenging situation.

I know that DS is just lashing out...but he is usually such an affectionate little boy so it makes it harder.

Livingtothefull Sat 16-Nov-13 18:11:22

Well I did go for a run...up a hill too! My back aches now but it was still good to do. Then I bought some food & a new shirt for DS. It felt good to be out & about again doing normal stuff.

I just want to say again, thanks so much to all who have posted here, it is appreciated more than I can say. Even if I have not specifically referred to your posts I can assure you that they have all been carefully read and reread. Plenty of great advice there and it has been heeded.

Today we got a phone call from DH family member whom he felt (with some good reason in my opinion) let down by. As it rang, DH said 'if it's (family member) I'm not here'. Didn't want to lie so i let it ring, sure enough it was this person who left a message asking about DS....not sure if the concern is genuine but am sick at heart that it might not be. I can't interfere.

I realised that I forgot Dniece birthday recently, feel really bad.

Livingtothefull Mon 18-Nov-13 14:39:36

We are looking to get DS back to school tomorrow, he howled when I told him we didn't think he was fit to go back today. He goes to a special school with resident physiotherapist etc so they are well set up for his care.

The district nurse is coming today to check his dressings etc so hopefully we will get an all clear to send him.

My Dsis called last night to find out how DS was, I feel guilty now because I ranted to her about how I had no time for anyone's problems if they were not on a scale of DS's, that he had been through hell and some of those moaning & groaning to us about how bad they had it, needed to get a life....and that our DB did not know how lucky he was, having 2 happy healthy DC's.

I feel guilty about this last particularly...DB has had troubles in his life also, who knows maybe he thinks I could have been more proactive at the time in supporting him? He has also been in touch by phone/email to offer support so I think I have been much too hard.

Another family member who lives abroad, has been contacting by text, email etc asking for updates...evidently we have not been quick enough in getting back to them, we have just had a text from them insisting that they want to fly over here to 'help out'. I just don't want this, the last thing I want is a whole lot of drama. We are coping OK and don't need help, maybe not brilliantly but OK.

The first thing this person will want if they come over, is a lift from the airport from us.

I feel really crabby and bitter and am not proud of feeling this way. I just want to get back to normal and for DS to get back to being his usual happy self and to no longer being in pain.

Rant over....I don't expect anyone to have solutions to this, I just want to offload/have some handholding.

Livingtothefull Mon 18-Nov-13 14:42:05

BTW family member who wants to come over is the same as the one in the last post(ie the one who called whom DH didn't want to talk to).

theoriginalandbestrookie Mon 18-Nov-13 16:19:53

Why don't you email/text your Dsis to apologise for last night? She may not feel you need do to it, but it will stop you worrying.

Re the other family member, I would text or email them, thanking them profusely for their concern, but tell them that DS is due to go back to school tomorrow so they really don't need to come, but you really do appreciate their kind thoughts.

Lay it on about how busy you are at the minute with DS so you can't respond timeously to their contact, but you will contact them if there is any change in his condition.

That's good news that DS is almost ready to go back to school, fingers crossed he gets the all clear.

Oh and well done for your run btw - wish I could get going rather than stuffing myself with chocolate all the time.

Livingtothefull Mon 18-Nov-13 20:47:46

Hi, yes I took your advice original & texted my Dsis and she sent a sweet message back so all fine... we have also put off other family member.

Tomorrow, hopefully, DS is back at school....I may then go running again then start the job hunt in earnest.

I also need to try to start thinking about my studies as I haven't been near them for weeks. I am sure my tutor has given up on me...need to email and explain why I haven't been in touch, have been putting offhand putting off as I have felt so bad. I hope that he does not consider it is too late for me. I have till end December to complete a 6k word project! Help!! I will regret it to the end of my days if I don't deliver on this (there goes the guilt feeling again....why is there so much of it washing around in my life? I do feel that all this guilt is counter productive....makes me less, not more, likely to deliver what is needed).

Livingtothefull Mon 18-Nov-13 20:49:50

I still haven't got my act together re Dniece birthday present....nn to send a belated gift even if just a cheque. Hang your head, well and truly, in shame Living.....

NothingMoreScaryThanAHairy Mon 18-Nov-13 21:15:39

I truly believe you should be receiving far more help than you currently do in respect to DLA. When was the last time your ds was assessed? and did you have anyone help you complete the paperwork.

If he is incontinent and attends special school I would imagine he has fairly significant additional needs. To put it into context dd2 has Cystic fibrosis she has treatments during the day and occasionally at night. She receives mid rate care (and because of that I can claim carers allowance).

Have you thought of contacting your local carers hub for more help and support?

If you were able to get DLA (at a level approriate for your sons needs) and CA would that help release the pressure slightly with the job hunt and allow you time to care?

Livingtothefull Mon 18-Nov-13 21:19:43

I think that I am too hard on myself as NannyOgg has said upthread, that expecting this much is actually counterproductive. When I feel that whatever I do is not good enough, it makes me want to not bother at all....and I can't afford to feel that way. I need to be effective and I also want to feel reasonably OK about my life & what I am achieving, which in turn helps me be more effective.

How can I be kind to myself when I lead a life which makes no allowances for kindness...which makes a set of demands and does not care how I might feel about them? As I have tried to say previously, success is in the doing, in positive achievement not just in 'being', 'existing', 'inspiring', 'thinking good thoughts', 'meaning well'.

I need to care for my DS. I NEED to find a job to keep the roof over our heads. I need to study as if I fail I know I will regret it for ever. I need the wider family/friends circle to know I care. And I need to do it all now....prioritising doesn't come into it, I never get this time back.

Livingtothefull Tue 19-Nov-13 09:20:40

Well I had DS ready in his school uniform and school bag at the bottom of our road (a minibus collects him to take him to his special school - our road is too narrow for it to drive all the way up to our house) at usual pickup time.

Got a call from DH to say he had received a message from the bus driver/escort that they would be late as the child who was picked up previously had been 'playing up' and it had taken some time to persuade him into the bus, hence the lateness.

I am afraid I just lost it and ended up shouting down the phone at DH: Why could the other DC's parents not damn well make sure she was on the bus in time? Why were they such wimps unable to handle their own DC? They can't put up with their DC protesting if they laid down the law and said 'you are getting on the bus right now and no more nonsense'. I managed to lay down the law with my DS and get him ready on time, despite him screaming abuse at me practically non stop until I felt sick. I still got him ready on time for the bus & as a result had DC standing around in the cold - just after having surgery - because of this? If the bus had been held up due to traffic it would be different/unavoidable.

I have been up since before 6am to get DC ready for school. This involved unstrapping his gaiters to do his painful stretches whilst listening to him screaming in pain and shouting 'Fuck you' at me, doing up the gaiters again ( quite tricky and need to take care with his scars/stitches), balancing him at the edge of his bed to do a pee and cleaning him before putting a nappy on, giving him his medicine, cooking and spoon feeding him his breakfast, then dressing him ( manoeuvring his trousers over gaiters and plaster cast - at the best of times it is challenging to get a pair of trousers onto a child who can't stand up.)

I still managed to get DC ready in time though. Why? Because I didn't want to risk inconvencing the other DC on the bus or their parents, or the bus driver & escort, by being late.

AIB totally U at fuming about this? I am really scared at how angry I am getting....have no idea what challenges the other DC parents are having to face so I might be totally unfair.

bibliomania Tue 19-Nov-13 09:50:36

That sounds like a nightmare morning, and the thought of it being day after day like that - oh, you poor thing.

Do you think you might be angry at those other parents because they are a safe target? You have a lot of anger inside, of course you do, at the unfairness of everything - is there any safe place to express it? Can you go outside and smash up some old crockery (buy some super-cheap stuff in a charity shop if you need to) or the good old punching a pillow or something? Or just go someplace where you can scream as loudly as you want?

Livingtothefull Tue 19-Nov-13 10:12:06

Thanks bibliomania, yes I think you have nailed it and I have a lot of pent up anger which has nowhere to go. DH called back later all worried as he thought I was angry at him as I had been shouting.....I assured him I wasn't as it was not his fault but that I needed to know he understood where I was coming from and he said he did.

I didn't say anything or complain about lateness, to the bus driver/escort, it wasn't their fault, they were inconvenienced too & they are not paid to put up with crap from parents. It would upset the children anyway, if I had made a fuss.

I have no idea what the parents of the other DC are facing, and no business making judgments. Every time I see DS wounded legs with the surgical sutures still sticking out of them I get upset. I can't even comfort him because at the moment he hates me.

So, I have a whole big bucketload of emotional upset and NOWHERE to offload it/NOBODY who is to blame.

bibliomania Tue 19-Nov-13 10:27:36

Poor consolation, but at least you're a "safe space" for your DS's anger. Honestly, everybody needs that so you've got to find one for yourself. I'm not trying to talk you out of your anger at the other parents. You're allowed to be angry. You should be - you need to be. You need to hit something and scream.

cq Tue 19-Nov-13 10:45:29

I've just read this entire thread and am in awe of you, living.

As someone else said upthread, the love you have for your DS just shines through even your darkest posts.

I have no helpful words or advice, but wanted you to know there are lurkers out here cheering you on.

I hope you get some precious time to yourself today while DS is at school.

Livingtothefull Tue 19-Nov-13 13:39:46

I try to express the anger when I can. I know that when I am hard on & berate myself, I turn the anger in on myself & that is not good.

I know I am not alone, most of us go through hard times. A couple of those kind enough to post have referred to their own special needs DC so I know we are far from alone. We are just trying to get through the hard times as best we can.

Yes I have tried to relax this morning....this afternoon I will try to find out about benefits entitlements as advised here, agree it seems possible I am entitled to more. Then I will contact my long-neglected course tutor.

Thanks so much cq for your kind words, your post helps more than I can ever explain.

Livingtothefull Tue 19-Nov-13 22:02:06

In desperate times there is comfort - and a source of great pride - in just getting on and doing what has to be done. Sometimes it seems that that is literally all there is, nothing else left to keep one sane.

Livingtothefull Wed 20-Nov-13 20:06:49

OK we received the following letter from the Disabled Children's Team re DS, re our request for support for his independence at home. Please let me know your thoughts:

'As you are aware (DS name) is on our waiting list for an assessment with regards to increasing his independence with toileting at home. I understand....that since we last saw DS at home (btw this was in 2008) his independence with toileting at school has greatly improved and it is hoped that with some equipment it will be possible to achieve the same success at home. At present we are operating at a 0.5 staffing and therefore it is still likely to be some time before DS can be seen with regards to this. (Maybe will be another 5 years before they can do this then).

The reason I am writing is because I received a phone call from DS school Occupational Health provider this week following his recent op as she wanted to discuss DS current personal care at home with regards to the advice that our team would give and further provision could be made.

(School OH name) advised me that at present, although you have ensuite level access shower facilities provided for DS, you are currently choosing not to use these and are currently carrying DS to your ground floor bathroom and lifting him in and out of the bath. This choice places both yourself and DS at risk of falls and severe/fatal injuries. Since provision has been made for DS to safely access wheelchair accessible washing & toileting facilities our advice would be that these facilities are used.

It is also noted that you are choosing not to use your through floor lift at present and are continuing to carry DS on the stairs. This places both yourselves and DS at serious risk of injury and possible fatality'.

Livingtothefull Wed 20-Nov-13 20:07:32

And here is the jist of DH's response to the above:'

'I have received a distressing and unpleasant letter sent by the Occupational therapist team in (regional authority).

It should have been anticipated that this would cause us immense distress. I am extremely disappointed that a professional should communicate without understanding the full facts.

We requested a chair with wheels, in order to allow easier access to the downstairs bathroom.....for easy toileting the down stairs is easier for the time being, whilst he requires from his surgery.

DS enjoys the bath and sometimes requests one. He has few enough pleasures in life, so we do not want to deny him this as an occasional alternative to his shower. We are extremely attentive as to his safety at all times; we are both conscientious parents who would never endanger DS. We have never ever had an accident or even near miss whilst involved in DS care; by any standard that is an excellent safety record.

With regards to the accusation that we do not use the lift, this is incorrect. It was agreed previously with OH professionals that he should be encouraged to access both and that if he prefers to shuffle upstairs (accompanied and supervised at all times) then that was acceptable. This is DS home and as far as possible he should be free to get around his own home by whatever means he sees fit, and as his parents we can and should be trusted to safeguard his well being as hitherto we have successfully done.

I would like clarification as to what exactly was said between these professionals as certain facts have been misinterpreted. It is impossible to carry DS upstairs especially post surgery; he is unable to shuffle upstairs at present so we use the lift. He cannot access either the bath or shower at present so he is sponge washed by us.

In summary, your letter accuses us of endangering DS. Given that we have just witnessed him go through a 6 hour operation and dealt with the painful aftermath, this accusation has caused us immense and wholly predictable distress. I can say catagorically that it is untrue as well as being highly offensive to us as his parents.

I note that DS has not been reviewed since 2008 - well over 5 years ago - during which time period he has had 3 operations.

I have been truly shocked by this letter and both Living and myself are very distressed by the blatant accusations of endangering DS. Will these officers please understand the consequences of their inappropriate remarks. We look forward to a redraft of the letter and a retraction of the accusations made'.

NothingMoreScaryThanAHairy Wed 20-Nov-13 20:29:11

Well done to your dh, sometimes the professionals do not think about the impact of their words. Especially if they are second hand and have had NO contact with you for over 5 years. It's laughable that they think they are qualified to comment.

Just rereading what you actually do for your ds in a day (even the small snapshot you post here, and I know that is only a small snapshot there is no way you should only be getting mobility element of DLA. I know I am banging on about it but to you have any support locally to fill the forms in? I only ask because even though I am an educated professional having an idea of how to say what I was saying made a huge difference and also describing the worst of days rather than what I hoped would be the best. If he is difficult and confrontational (understandably that should go in (it doubles the time to do anything ime). I do not want to teach you to suck eggs. But it is so hard to look at the screen and see all that you are dealing with and thinking even we get mid rate care, (different circs but still). And I wonder if the DLA and the carer's would take the pressure off you in the short term to allow you to regroup. I don't know where you are in the UK but I am sure there is a support group who should be able to help you.

Livingtothefull Wed 20-Nov-13 21:05:17

Thank you NothingMoreScary, I can assure you we are following up as you advised re DS & our entitlements. DS care needs are of course much more challenging than normal post op; but even at the best of times he needs a high level of support and as he grows it puts more demands on us. Yes there are some local agencies which have been very supportive so we are approaching them.

I find it ludicrous that this woman who wrote the letter ( who has not seen DS in years) feels qualified to comment; by her insinuation - or rather outright accusation - that we are not safeguarding DS. I am just so offended and feel patronised by her letter; as if we, unlike 'normal' parents, cannot be trusted to make judgments as to what is safe for DS in the home (as every parent does all the time).

When DS is well he is very good at climbing the stairs; I would like to see this woman stop him from doing it. If my back is turned for a second he is on his way up. I feel that any independent activity he is able to do should be encouraged. If he is in the bath or on the stairs we don't leave him for a moment.

bibliomania Thu 21-Nov-13 09:35:05

Well done to your DH! I can't believe they would give you so little help on the one hand, and scold you for doing it wrong on the other! Talk about an utter lack of self-awareness! That really rubs salt into the wound.

Of course you should be encourage DS is whatever independent activity he can undertake - it would be cruel to take that away from him.

Can't remember if it's been said previously, but have you been in contact with your MP? For me, admittedly in a totally different context, the involvement of my MP's office was the one thing that made a bureaucratic blockage suddenly disappear.

Livingtothefull Fri 22-Nov-13 11:02:41

Have had a response now......our concerns are being taken seriously & her boss is being involved.

Yes contacting our MP is a good idea bibliomania, we have done this in the past when we have felt the need. I will see what the outcome is now before deciding how to proceed with this.

I would like to see this woman tell me how to lift a struggling, screaming, uncooperative near-teenage boy with leg gaiters and a plaster cast into his wheelchair, as I had to do this morning, without 'endangering' him again.

bibliomania Fri 22-Nov-13 11:17:13

Good to hear that your concerns have been listened to. This woman should be trying to make things better for you, not worse.

That must be murder on your back. You're a strong woman, in so many ways, even if you don't always feel that yourself.

Livingtothefull Tue 10-Dec-13 00:45:38

I am sitting here again, far too late at night.

I don't want to talk too much about the weekend I have had. Suffice it to say that copious quantities of emotional distress were involved. On the side of DS, on the other hand, he has experienced outright physical pain.

I am desperate to hold it together and am begging for help. How do I remind myself that I am a human being as is DS and that we are entitled to expect life to be rewarding..even pleasant at times? Rather than sheer hellish suffering, day on day?

I am just tired of watching my DS suffer. If there is one thing guaranteed to make a DM feel that she is a bad mother, it is to watch her DS suffer and know that she can do nothing to help; what is more, knowing that she has advantages in life that he will never have.

She (i) grew up feeling socially awkward, thinking that feeling vaguely disliked by all those around her was the worst evil that could befall a human being; that it was her lot to feel inferior and that was just dreadful. That is before she had her DS and had years of watching him suffer and really knew how hellish life could be. Life is remorseless where some people are concerned; it really doesn't care how much those select people suffer. It singles out individuals like my DS; unilaterally decides 'I earmark you for extraordinary suffering' and accordingly piles it on.

I really wish I could lose the social awkwardness, the prevailing sense of inferiority now though; it is an additional burden I just don't need. I will never ever have peace of mind, but how I wish that I could operate from a position of strength and that self esteem could be mine.

Livingtothefull Tue 10-Dec-13 01:06:20

I just want to be emotionally strong with no chinks, a role model for my DS. I am tired of being openly sneered at.

I am still trying - failing - to get a job. I have until 7 jan to do my dissertation and I am not doing it. I am not even panicking,I am just like a rabbit in headlights even though I will not get a further extension. I am an all round failure at present and so feel all the associated guilt and grief.

Livingtothefull Tue 10-Dec-13 01:31:37

How do I keep going and why should I stay sane? I will NEVER harm DS but all the same I am scared to ask for help.

There are several things that rank as the worst in the world; here is one of them. When your DC is in pain and you know that you can do nothing to help him, to alleviate his anguish, you end by being irritated by his cries. I know myself as a terrible, horrible person.

Livingtothefull Tue 10-Dec-13 01:45:34

I remember, when DS first arrived, some family members telling us 'he was given to you for a reason; he was meant to be with you'.

I don't know why they think that; on what basis do they think that we are exceptionally well equipped so as to ensure we can handle this? I note that we seldom hear from these family members and so are, largely, left to get on with this.

I do believe in God; but I wish that when he gave me DS to care for, he could have taken my self doubt away.

Reelife Tue 10-Dec-13 02:04:30

Hi Living.

Didn't want to read your posts and ignore. I too am awake when I should be asleep, but I only have the mundane stresses of life to deal with.

The middle of the night is the loneliest time, isn't it. The quiet emptiness seems to drag your mind to its low point.

I can't begin to imagine what you go through on a daily basis. I often think, when I see articles or watch tv, how amazing parents such as yourselves with real challenges are. You are totally entitled to be upset and rail against the "fairness" of life. You don't always have to put a brave face on, and the boards here are an amazing source of support. As a parent of two "NT" children (for want of a phrase) I feel I can express a negative opinion about myself or my parenting - I should imagine the pressure is intense if you feel that someone is criticising the care you are giving your lovely boy when they have no idea what you live with on a daily basis.

This is a bit of a ramble, and in certainly no way meant to be patronising, but remember in these lonely small hours of the night, that there is always someone who can listen to you. Xx

HawthornLantern Tue 10-Dec-13 02:17:02

Living I didn't want to read your posts and leave you unanswered. I read such a loving and articulate DM coping with unimaginable levels of stress and distress. I have no practical experience to draw on but wanted to know someone read your posts and was thinking of you.

Scarletohello Tue 10-Dec-13 02:35:41

Hi I've just read your thread and its had me in tears at times. Especially when you said you were a 'failure as a woman'. You are incredible! The love you have for your son, the care, the strength you have, is impressive.

I feel very humbled reading about your life. The last year I've been looking after my dad who has dementia and is blind and I've found it frustrating, unrewarding and lonely. One night I was so desperate I went online to try and find an organisation that supported carers. I found one but it wasn't till I was on the phone that I realised it was in Wigan! But the woman was lovely and just let me rant and sob...

So I was thinking you really need some emotional suport, have you contacted Carers UK? I know they have a helpline and I am sure they could listen to you as we'll as give you any advice on benefits. You really need an outlet for your feelings, I know there's MN but because of the amount you post and what you're dealing with I really think you need more. You are an amazing woman and you need to take care of you!

Livingtothefull Tue 10-Dec-13 20:16:37

Thanks so much again for all your messages. Scarlethello: I am sorry what you are going through with your father and yes it is incredibly isolating and lonely caring for a loved one, when the condition is permanent/ongoing. I hope you have found the support you need and thank you for your kind words.

This evening we had a call from DS school as they are so concerned about his condition and state of mind. He is usually a happy, cheerful boy so it is heartbreaking to see the change in him. His carers at the school seem genuinely upset. A couple of the neighbours have noticed how he has changed for the worse.

We contacted the doctor again to arrange an appointment this week and try to get him some support. Receptionist: 'You can't have an appointment this week, we are fully booked. It will have to be next week'.

Us: 'no that will be too late, he needs to see the doctor this week'.

Receptionist: 'the only thing I can suggest is that you call in the morning and try to get an emergency appointment on the same day. There are no appointments this week'.

Us: 'Let me explain something to you. My DS has severe disabilities, he has had major surgery recently and there are complications arising out of that surgery. He needs to see the doctor this week and we need a firm appointment'.

Receptionist: 'I've already told you that we can't do one'.

At this point DH went absolutely ballistic at her and in the end, said she would arrange for the doctor to call us. Why couldn't she have suggested that at the outset? Why does all the pushing have to come from us? Why are we left feeling that nobody wants to support us?

I am so unhappy...we have hardly been bombarding the surgery demanding help ( partly because we know how unhelpful they are likely to be). All they have had to do so far is give me an (incorrect) phone number for the district nurse, and dole out a couple of painkillers prescriptions.

Livingtothefull Wed 11-Dec-13 13:13:56

OK I got a call from the doctor.....she will see him tomorrow evening.

I sound as though I am moaning about everyone, I don't mean to be like that. I think I can appreciate anyone who is trying to be supportive (even if they are actually unable to help) but find it upsetting when those whose job it is to assist us, seemingly couldn't care less.

I think I have more or less given up on the jobhunt this year....the interview I went rushing to yesterday morning, after a sleepless night with DS, went nowhere.....I got a call yesterday evening from the agent to tell me I was unsuccessful. So it didn't take them long to confirm that they hated me....what is the matter with me? I didn't want to tell DH and upset him further as yesterday was a bad enough day. He still doesn't know.

I felt really down & depressed about everything yesterday but I am trying to be more positive now.

So I think the rest of this year will consist of:

Continue to support DS first & foremost. Get a few hundred out of my savings account to pay for his wonderful Xmas;

No more active jobhunt (though respond to any job ops that agencies contact me about);

Focus on MA project and (somehow, by some miracle, get it done by the deadline 7 Jan).

Does this sound like a plan?

Livingtothefull Thu 12-Dec-13 21:59:01

Well we took DS to the GP & have also been in touch with his consultant who did his op....it seems his pain is due to stretching of the tendons in his legs affects the nerves which is known to often cause hypersensitivity & severe pain. My poor boy must have been in agony for weeks.....but at least now he has a prescription for the appropriate painkillers so we hope will be more comfortable soon.

The GP told us that following the argument with her, the receptionist has made a complaint about us which will be dropping through our letterbox very soon. So I will have to read it to see if it requires a response.

I wanted to work on my MA project but have just not done what I set out to achieve today....so feel a sense of failure. I just need to grit my teeth & somehow get through the next few weeks and out the other end. I am really really suffering at the moment & just want this all to be over....to wake up one day and realise the worst is over & we are in the midst of better times.

Here is where I want to be:

I want my DS to be over his op, out of pain & enjoying increased mobility & well being from the surgery. He has been miserable for so long now and this is not in his nature; bless him, by nature he is far & away the happiest person I know. I want my old DS back again;

I want to have a job that is reasonably rewarding and challenging;

I want to somehow knock these studies on the head, finish my MA and pass.

None of this is going to be any fun at all to achieve; but somehow (say by early next year) this is where I want things to be. So please, root for me or pray for me & DS.

Livingtothefull Thu 12-Dec-13 22:41:29

I am getting what I think are panic attacks; suddenly it is as though my mind can't handle what is in it. I feel nauseous & have actually been sick at times. I get a metallic taste in my mouth and - it is weird - forget how to swallow which scares me. Swallowing is usually so automatic, a reflex; suddenly I find myself sitting there with food in my mouth, momentarily unable to do it.

Maybe counselling would benefit me; but to be honest the thought of the process of finding a counsellor and attending sessions, feels like one more thing to do, one more burden. DH is under pressure too and sometimes takes it out on me too which I just can't handle.

Livingtothefull Thu 12-Dec-13 22:45:01

I just don't understand why life has to be so hellishly hard.

Livingtothefull Thu 12-Dec-13 23:08:32

I feel very alone now. My DFamily mean well but can't comprehend what it is like. I do feel that I am failing......success seems to be so effortless for my DSis and DS. I know I harp on about my lack of confidence....I am not sure why it is such an issue but I feel that things are so challenging that in order to deal with it I need to be as hard as nails and be rid of the self doubt...it has to die and how can I kill it? I am sitting here again and feel as alone as I have ever felt in my life.

Livingtothefull Thu 12-Dec-13 23:13:58

I meant...success comes easily to my DB not my DS. I wish my DS had it easier but he never will. I fear for DS future....what happens when we are no longer there for him? He doesn't have any siblings, I can only hope that he will live his life cared for by good people as he will be dependent on others for ever.

TomPot Thu 12-Dec-13 23:23:01

Didn't want to read and run. Living, you sound like an incredibly strong woman who has been dealt a very tough hand. I'm not qualified to give any advice - have you managed to speak to anyone at Carers UK? Am sure they will able to offer some real, practical help. I hope that 2014 is an easier year for you.

Livingtothefull Thu 12-Dec-13 23:23:09

I am so close to being done. I think I really would be better off dead.....but that is not an option as I will always be there for DS. There is a comfort in just getting on and doing what has to be done. But I am struggling because life just refuses to get easier, there is very little joy and I don't feel that there is much support at hand.

Livingtothefull Thu 12-Dec-13 23:28:26

Thanks Tompot, I didn't manage to get through to anyone at Carers UK but will try again tomorrow, could also try Samaritans. I am not sure what kind of help would benefit me & DS, both practical & emotional support I guess.

TomPot Thu 12-Dec-13 23:35:09

Yes, it sounds as if you need to concentrate on getting yourself some emotional support. Please do try them again. There will be people out there who can help you. Even if you just call for a talk initially, and see where that leads.

pinkbraces Thu 12-Dec-13 23:38:35

Hi living,
Ive just read your whole thread - the love you have for your DS just jumps out at me. I wish I had some wise words to say but please please try and see how much good you do.

Im here listening and sending all my support. Please try the Samaritans as Im sure they can help you.

tinypumpkin Thu 12-Dec-13 23:41:59

Another one sending you strength right now. You deserve happiness for you and your family. Hoping for a brighter 2014 for you.

I second calling the Samaritans. Someone to listen without judging.

Livingtothefull Thu 12-Dec-13 23:47:32

Thanks pinkbraces, I really appreciate your support. I am just trying to articulate the love that I feel for DS.

I do want to feel l am a force to be reckoned with as my DS deserves no less. At the moment I feel like 'a force to be trodden on and kicked'. I feel so unequal to what I have on my plate. Why should I feel good about myself? I thought that 'what doesn't kill you makes you stronger', it isn't working out that way. What isn't killing me is just making me suffer and I don't feel at all strong.

Livingtothefull Thu 12-Dec-13 23:51:05

Thanks tinypumpkin. I just desperately desperately want the new year to be better. 2013 has been largely unlucky for some.

My thanks to you & all those who have posted here.

Livingtothefull Fri 13-Dec-13 00:12:48

I wish I could stay up all night. I want some critical distance from the emotional agony. I want fear to be killed stone dead, so that I can get on and support my DS and family. I wish I wasn't so scared of people and did not feel so inadequate.

If I don't do the MA I will regret it forever, I know that. It may help me get a better job which in turn will benefit DS.

I am trying & failing to get a job....have had numerous interviews, numerous rejections. How do you numb yourself to all of that? I am failing myself & my family by failing to get a job. I think that there is some vital piece of me that is missing, so whenever I have an interview it becomes obvious I fall short. But I don't know what it is I am lacking, what I have to do to put things right. I am just failing at everything I do right now.

Livingtothefull Fri 13-Dec-13 00:29:03

I am nearly done now. What is there to keep me going? My DH is irritated with me....he went to bed early to get away from me. My DS.....well I have his abuse and name calling ringing in my ears. Prospective employers definitely do not value me. I have been bullied at work. I am tired of the insults, disrespect and contempt. Evidently, certain people know they can get away with treating me this way.

I think I would be much better off dead. However I will stay alive so I am there for my DS; also, to see how things unfold. Just on the off chance that life gets better eventually.

Livingtothefull Fri 13-Dec-13 00:40:44

I don't know how to get through this. I heartily wish it would stop. I don't ask for much....just for life to shift from the 'unbearably painful' into the 'reasonably liveable' category. Out of the reasonably liveable I can do something, I can fashion happiness. At the moment I am at a loss as things stand. This can't go on much longer or it will finish e.

Livingtothefull Fri 13-Dec-13 00:41:23

...or it will finish ME

Livingtothefull Fri 13-Dec-13 00:44:32

And if it finishes me I can no longer be there for DS.

Livingtothefull Fri 13-Dec-13 00:51:00

I must be a terrible, contemptible person. Why else would all the doors to a better life slam in my face whenever I approach them? I just want a half way decent life and all the doors are slammed shut at present. There must be a reason why it is all so hard, i don't know though why I deserve this.

Livingtothefull Fri 13-Dec-13 00:52:52

I am going to bed now. I am just done and I wish I didn't have to wake up tomorrow.

Livingtothefull Fri 13-Dec-13 01:31:52

I am sleeping on the sofa tonight, I am isolated from everyone and everything.

Livingtothefull Fri 13-Dec-13 01:44:46

I hate this, I know ultimately I am alone

dm1mum Fri 13-Dec-13 02:27:28

OP you sound so low and I know my words won't be adequate but I just wanted you to know that someone is listening. I remember your earlier threads and I'm sorry it is all still so hard.

You really don't deserve this and you're not a failure. Your DS loves you. Have you spoken to Samaritans or anyone else in real life about how you are feeling.

You asked a few posts back for people to root for you and DS - I promise I am rooting for you and praying things will get easier soon.

Livingtothefull Fri 13-Dec-13 07:33:59

Thanks dm1mum, for various reasons I can't unload to family/friends about everything (though they do know some of it) but will try to talk to Samaritans or somebody today.

Livingtothefull Fri 13-Dec-13 09:10:43

Ok I called Samaritans & she was great, it was good just to be heard.

I know I am probably just talking to myself & otherwise apologies if this is the wrong forum but....... I know what I have to do, my course of action is clear: 'Care for DS the best you can. Finish your MA however hard it is. Then go all out to get a job early next year'.

There is nothing I can do about any of the rest. I just wish I did not have to sit here in Hell whilst doing all this.

dm1mum Fri 13-Dec-13 11:26:47

I'm glad you spoke to someone. I think you're right about making priorities too. You can only do so much - really truly anyone in your position would be struggling. I understand about not involving family/friends but keep talking to someone in RL if you can.

Good luck.

pandarific Fri 13-Dec-13 13:17:16

You seem super strong - keep going! Maybe try replacing the wine with 2 tsps of cocoa in skimmed milk, with sweetener - lovely hot chocolate, and low calorie.

Practical help on finishing your MA: this is great for writing - if you've limited time, try getting all your notes out, spending a moment on thinking out what you want to say, deciding to put (researchers name) for all of the in-text references white you type, and opening up http://writeordie.com for a half an hour or an hour.

Doing this will help you quickly get a draft together, and editing it to be better after you've finished the initial writing is much less scary and much more positive-feeling.

Don't give up! Once you've got a final draft I can proofread it for you if you like? (I've worked in publishing so can help you out on that note.) And before final stage you could ask a colleague in the same area to have a read through and mention any notes to you?

Don't despair, you're nearly there!

Livingtothefull Sun 15-Dec-13 01:41:26

Thank you pandarific so much for the great advice, I will follow it. I am trying to do this project methodically and make use of the limited time to achieve it. I have been just hopeless though today in doing what I set out to do and I want to do better. Please wish me all the best in having the will to just get this project done. I am frighteningly close to the deadline now.

I am sorry as I just fail over and over again. I wish I was not so convinced i was inferior. I am being honest now, I feel inferior to the majority of people I encounter. I wish I did not have such a conviction of this. I wish I felt that I was on more of an even keel with those around me; even if it turned out to be untrue. Obliviousness of my own inferiority would help me to be more effective, I understand exactly why those who have the gift of confidence generally achieve well. I never had that gift; trying to get it has been like hunting for the holy grail. I was born with a vital piece missing & i just have to accept that.

So I have given it up now. Self esteem, knowing in my bones that I am a worthwhile person, is just another source of happiness which is closed off to me. But all that matters is that I am more effective at doing what I have to do (complete my MA, care for DS, look for a new job etc).

We had a tough time today.....took DS to a restaurant for lunch, which he specifically asked for so we wanted to treat him. But when we got there, he had a meltdown and started swearing at the top of his voice & we had to take him out. We are social pariahs. DS has been in pain for weeks so I feel I have to stick up for him....but can't condone what he has done as I am convinced he knows better.

DS is like any teenager but also has severe physical & mental disabilities, the use of only 1 of 4 limbs and, at the moment, intense pain caused by nerve damage. Yet I am reprimanding him, I think he knows better but it could be that I am expecting too much of him.

Livingtothefull Sun 15-Dec-13 01:43:12

Thanks pandarific so much for the offer to proofread, I may take you upon that

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