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Sorry that I ramble on but really need handholding now...

(250 Posts)
Livingtothefull Fri 20-Dec-13 23:18:54

I have posted previously about my situation and have probably bored every reader senseless as I do tend to write too much. I just need to find a way to get through the time I am having:

My DS (12) is severely disabled, wheelchair bound, has epilepsy, cerebral palsy and severe learning difficulties. He has recently had major surgery and is still in severe pain. It turns out that this is caused by stretching of the nerves at the back of his legs which has only just been diagnosed & medicated (god only knows how painful this has been for him). We (DH & I) have to give him physio several times a day, this is excruciating for him & he lashes out at us. This will have to continue over Xmas.

In the meantime I am unemployed and actively jobseeking. As you know it is a very competitive market and this translates into rejection after rejection, even at interview stage. If I don't get a job by early next year then we are stuffed as we can't afford to live for very long on one income. I am scared that i may face my DS being made homeless; i tell myself it won't come to that. It is very hard to take; I am not a confident person but feel at rock bottom now. What on earth is the matter with me?

I am trying to complete a Masters degree; am on the last part of the last module so am tantalisingly close. I have one more piece of work to complete; the deadline is 7 Jan. I can't extend this date; I have already had an extension due to mitigation re my DS condition & I won't get another one. I am not even panicking, which is bad; I just sit here mesmerised my the magnitude of what I have to accomplish by 7 Jan. If I don't do it I will regret it for the rest of my life. So I have to do it....somehow or other.

What is it that seeps through this post? Anger, panic and despair......I feel that I am failing and I just feel very sad today. How do I keep going and trust that things will get better? How do I keep myself sane? Where does confidence come from? I never had it so I don't know what it feels like. I just try to tell myself that I will complete the study project somehow or other, DS will recover and next year will be better. But I am not confident of any of this & feel hugely resentful that life has to be so hard.

cjel Wed 25-Dec-13 07:35:28

Wishing You and your family wellxx

living, you are just going to have to feel the fear, and do it anyway confused

I think your DS has a pretty special mum, actually.

Have a lovely day.

Livingtothefull Wed 25-Dec-13 10:33:18

Yes you are right sparkly about feeling the fear, I will just have to put the negativity in my pocket as it were and get on with things....'things' at the moment consisting of having a great Xmas with my family.

DS got his Christmas sack of presents this morning (no mere stocking-full for him) & said 'These aren't very good. Are there more presents downstairs?'. I suppose I will laugh one day about the things he comes out with.

My thanks to you all and best wishes for a wonderful Christmas for you & your families.

Perfectly normal reaction for a 12 year old! ungrateful little sods wink

Tuhlulah Thu 26-Dec-13 09:44:48

Hello Living, how are you doing today?

I laughed at your son's reaction (in a good way). He is just voicing what so many children and people think, although that's no consolation for you as you have tried so hard to make it all perfect for him. I hope you're not phased by it.

I hope things have calmed down for you all now. No doubt all this hysteria about Christmas somehow gets to him too.

We all think we're not worthy and not capable. Could you download from your university other MAs for you to read, so you can gauge the academic level and set up, etc? You can do this with PhD dissertations from the BRitish Library but not sure about masters. You could see from this that not every piece of work is a masterpiece.

I'm sure you are capable. As my DH says, it's 99% perspiration and 1% inspiration.

I just wanted to say hello to you today. After tidying up I am going to try to work today too. I have been procrastinating for far too long.

XX

Livingtothefull Mon 30-Dec-13 23:58:47

Dear All, I hope you have had a great festive season.

It has been a challenging few days but lots of good times with the family. DS has been back to the hospital & has his plaster cast off so...progress. He is still lashing out but we hope he will be more comfortable now he is more mobile. We had to warn the family beforehand what he might be like but actually he was very sweet.....hugged my DM and said he loved her. He is just stressed out & I think traumatised by what he has been through.

Thanks Tuhlulah for your post. I know that on one level it IS funny that DS is so outspoken, I just do feel worried at what he will come out with. He is getting bigger & many people don't see the funny side, I worry that if he gets to be perceived as anti social it will alienate us even more. I am just hoping that it is temporary & as he recovers & feels more comfortable he will get better.

I am studying as well....made massive headway today though still have a long long way to go. But at least I do feel that I am intellectually up to it....have made it this far, just have to produce more of the same.
Please please tell me to keep it up to the bitter end (and it is bitter.....I am steeped in and sodden with gall).

7 Jan is when I have to have this thing done....until that date my nose has to remain clamped to, and periodically serrated by, the grindstone. Please encourage me to hold out to that date, after which I can have a life again.

I want 2014 to be a better year for all of us....yes all of those for whom 2013 failed to deliver what we hoped.

Livingtothefull Tue 31-Dec-13 01:15:21

I am going through an extremely dark time.

If I were in the position to be the arbiter of others' lives, I don't think I would ever choose for them to be so tough. I can honestly say I don't wish anyone ill will. I don't hate anyone; 'hate' I define as 'wishing someone ultimate harm'. I don't wish real harm to anyone. That could of course change....I might one day encounter somebody who does me or a loved one of mine such harm that I can honestly say 'I hope that you die a horrible death and languish somewhere in the lower reaches of Hell'. That would be hatred. Some of you have probably encountered such a person and therefore know real hatred. I can't say that you are wrong.

But from my current position of hatred-virgin as it were, it is incomprehensible to me how a universe which seems so superficially benign, could make my DS suffer so much within it; how it seems to hate him so much for no reason except that it can and will make him suffer; just for the sheer hell of it. The universe has nothing better to do.

And no there is no higher purpose; DS is not going to move on from this and live a better life than he ever could have done otherwise, be that much the wiser and more sensitive, a better person etc. He will always lead a highly restricted life and will not understand much except that he is suffering, when he suffers - which, at the moment, is frequently.

And we won't always be around to protect him; he won't always be loved as he is now. It is a harsh old world, chock full of cruel and indifferent people who just don't get it (some other MN threads illustrate that, and it was so disappointing to see that a firm stand was not being taken against disablism as it would undoubtably have been against sexism, racism etc).

One day DS will be all alone in this world & we will be unable to protect him. It makes me sick with fear for the future.

Do you understand why I feel I have to jettison fear, everything that is of no use to me? I have to be totally there for my boy while I can.

Livingtothefull Tue 31-Dec-13 02:02:07

It is at times like this (the middle of the night) that the sheer awfulness of what we have to deal with, truly hits me. I want to make sense of this.

I went to see my DB at Xmas & saw my DSis. They both have good lives, are doing well. My BIL & SIL are doing the same. I feel so inadequate, such a failure by comparison. I am sure they all look down on me.

Living you have truly had a dark night of the soul. I hope things seem a little better this morning. [hugs]

PaperBagPrincess Tue 31-Dec-13 09:49:51

Focus on the last assignment due in on Jan 7th. Your DH may have to pick up most of the slack with your DS and the house until then (it's one week...its do-able). In the mean time, talk to your tutors. Tell them what is going on in your life and ask them for suggestions. I completed my Masters after two deferrals of my final assignment - both due to major issues in my life related to caring for my autistic son. I would be very surprised if they didnt want to find a way to help you complete this now, should the Jan 7th deadline just prove too much.

Baby steps. At the moment you are looking at a Masters deadline, finding a job and your son's future all at the same time...one huge mess of responsibility and pressure and worry. Stop. One thing at a time.

Good luck x

Livingtothefull Tue 31-Dec-13 11:42:40

Thank you both. Yes Sparkly things seem a little better today...night time is usually the worst. I will have to get on with my studies soon though....may allow myself a New Years Eve glass of wine to go with them (any excuse).

I will focus on just getting this assignment done....and I WILL get it done. I will probably be a wreck but the assignment will be done.

I have contacted my tutor by email to tell him exactly what is going on re DS, how much of it was not anticipated and may affect the quality of my work due to lack of time/sleep etc. But he is on holiday till 6 Jan & the uni is closed....got an out of office message.

So will need to aim to get it completed by 7 Jan as planned and then maybe talk with him on 6th to discuss any options. At that stage, even a couple of weeks deferral to perfect it (& DS will be back at school) would be hugely helpful.

I do feel overwhelmed, and hugely depressed, about what is on my plate. But I know I have to just carry on, journeying through this. I wish my depression would not insist on coming along for the ride, but if it insists on coming then so be it. No way from here but forward.

I have another job interview on 2 Jan, quite a good job actually so fingers crossed.

I dream about the day when I will come home from my rewarding job to my happy healthy DS, think proudly about the extra flurry of letters after my name and tell people ( maybe with a tinkly laugh and yet another glass of wine in my hand) about what a hard time we all had at the end of 2013 but how it was all worth it in the end. Do you think I will ever get there?

Livingtothefull Tue 31-Dec-13 12:21:48

OK I am going to do some work now (if DS will let me). You are right tullulah, procrastination is the enemy so rather than trying to eliminate it (& I am a procrastinator by nature) I ration it out which seems to help.

Livingtothefull Wed 01-Jan-14 11:37:55

I wish all of you a happy and prosperous New Year 2014.

DS said yesterday that 2013 was 'f---ing horrible' and that he wanted it to end. Well now it has, and we have high hopes & wishes that 2014 to be better.

Unfortunately the year has not started on the greatest of notes. DS had a seizure this morning (which he is liable to have occasionally) and fell out of bed. He is upstairs now, in a stupor recovering from it all.

I am trying to steel myself to do some study work but really hard to concentrate now.

cjel Wed 01-Jan-14 11:47:57

Morning Living, Just wanted to stop by and say that I don't think your family looks down on you, you may find that they admire you for your life. Not everyone makes there judgements of people on their finances or career.

You are an amazingly successful person to be dealing with the things you are in the way you are.
I hope you can get some good work done today.
DS isn't the only one who is very glad to see the back of 2013smile

Livingtothefull Wed 01-Jan-14 13:32:57

Thanks cjel so much. I will try to get some work done this afternoon. DS is better & I have just given him his lunch.

No you are right I don't really think my family look down on me. They are not so shallow, I was wrong to put that in my earlier post & was just feeling extra cynical at the time. But I think they do pity me & that is barely any better.

Tuhlulah, I think your idea of getting past MA dissertations to look at is a great one. I am not sure if I will do it at this stage as I think my work is what it is....am worried it might backfire reading other people's work by scaring the life out of me! But may do this in the event I do get an extension.....am also planning a new intellectual challenge once this one is complete so something to bear in mind (as an aside: am I COMPLETELY MAD to even contemplate putting myself through this AGAIN??? Answer: yes. But I accept the advice that I need a break so would be looking at September before starting anything new)

Livingtothefull Wed 01-Jan-14 13:44:32

Just to reiterate: I am not plunging regardless into a new course of study as soon as this one is over. I know my limits and know I have just about reached them. As marimeifod has posted above, I need a break. Once this is all over, my priorities are: DS (get him better), job (get one), then, plan a holiday. Luxury weekend breaks in 5 star hotels are my thing....but of course I need a job to pay for them.

Thetallesttower Wed 01-Jan-14 13:54:37

I am so sorry life is hard for you, I don't know what to say as I haven't walked in your shoes on that one, you sound a loving and devoted mother but, god, you have been tested.

On the work front (which I am more qualified to comment on)- forget about it being perfect, just get the words out. I used to try and trick myself into writing, I say 'I'm just going to practice writing, this isn't the real version' then start out, and before you know it you've done 1000 words. And keep doing it every day. Even if you cry a lot, even if you are stressed, even if you are up a couple of nights- the end is in sight!

Don't depend on getting a further extension, as you rightly see, the university isn't back and working til 6/7th and it may be the person needed to do this isn't there or that the decision is no. So, aim to have a pretty good but not perfect version ready for the 7th, and if you get a further extension, great, but if not, that's what goes in, come what may.

Good luck with it all!

Livingtothefull Wed 01-Jan-14 14:09:02

Thank you tallesttower, I am about to continue writing up the last major section so yes will just get it written come what may. I have already learned that it is easier to edit once written, than to write from scratch so will just get the words down, then leave for an hour or to & evaluate what I have.

And I am acting on the assumption that I won't get an extension, you are right. Maybe other mitigation is possible? ie if it is just barely acceptable standard I will be given the benefit of the doubt? We shall see....anyway yes you are right that I should assume no mitigation and try to get the work to be good enough.

Livingtothefull Wed 01-Jan-14 17:31:06

My poor little boy has not been very well today....I am not sure if I will be able to attend the interview tomorrow, we had arranged childcare but don't think it is fair to expect the carer to look after him in the circumstances. So will have to try to rearrange for when DH can be at home.

God almighty get me through this time and spew me out the other end.

cjel Wed 01-Jan-14 18:18:22

Hope God carries you through , but places you gently over the other sidesmile although he wasn't gentle when Jonah was spewed out!!xx

Livingtothefull Wed 01-Jan-14 18:30:56

Thanks cjel....I never will understand why God treats so gently with some individuals and so harshly with (no less deserving) others. And I am talking about DS rather than myself. He suffers; I get to watch him suffer, it is suffering by proxy.

Maybe it is all part of some big universal plan which God has seen fit not to share with us; maybe it will all come right & DS sufferings, and the restrictions on his life, will not be in vain and further down the line he will be blessed a millionfold. In the meantime I can't help fearing that it is all for nothing. He will have as good a life as those around him are willing to give him.

Anyway, I'm off to cook DS dinner (pasta & cheese sauce) then settle down to more study. That's enough negativity for now.

cjel Wed 01-Jan-14 18:52:28

Pasta and cheese always good. I'm for the baked potato and cream option tonight, Happy studyingxxx

Livingtothefull Fri 03-Jan-14 19:54:22

Hi,
Good news.....I got a message back today from my tutor who has agreed to an 'informal' deferral to 20th Jan. That will be hugely helpful as DS will be back at school on the 8th. Any further deferral needs formal mitigation but I think this will be enough.

I need to try to stay focused though......this seems like a huge tract of extra time but it really isn't. I am starting to get a suggestion of approaching the end; it is such a good feeling when the end is in sight. Ideally I would like to get the thing 99% done, put it by for a day or two & come back to it fresh to finish off. I do just want the thing finished so I can be rid of it.

There's always the chance also that I might get a job in the meantime!! (I hope....)

I went to the job interview yesterday....managed to sort out childcare. The interviewer said she wanted to make a decision by today....of course today has come & gone & no message. I am trying not to get my hopes up. I'm afraid I am used to attending interviews & never hearing from the company again, which I think is the height of rudeness.

DS has been a bit poorly today, we are hoping to have a nice weekend. DH booked a panto for Monday for us, I was inwardly cursing him (poor thing) because it was the night before my deadline!!! Now at least I can relax & enjoy the evening.

Livingtothefull Sat 04-Jan-14 00:11:42

Sweetest boy has gone to sleep. He had another seizure this evening.

Thoughts, dreads and fears of mine want to rain themselves down on this thread, but I would rather they didn't so they won't. I don't think that they would sound very articulate. I think it is up to me to do the hard work of explaining what I mean.

It is selfish to want happiness; but what else could a human being possibly want?

I want to have a good career and I want my studies to pay off. Does that make me a bad parent? Because I want these things for myself? These are things that DS will never have.

cjel Sat 04-Jan-14 09:06:53

MOrning, I think you are the least selfish person. I think that you will all benefit if you are happy and fulfilled and I think its great that you have a dream. Great news about deferral and pleased you can see that you have acheived a good deal of the work.
I am sitting here in awe of you. I haven't been out for days and am getting worse with my agoraphobia again so the fact that you are doing so much amazes mesmile

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