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

(225 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.

marimeifod Fri 20-Dec-13 23:27:49

Sorry for what you are going through. Study stress is in my opinion massively underestimated and I have a lot of experience of supporting my partner (circs very different from yours) and what I took from that is that even though it may feel from here like you can't possibly get another extension, it's always better to speak to someone from your course such as a tutor as soon as you can. Let them join in in exploring ways to support you. It's in nobody's interests, uni included, for you to fall at the last hurdle and you will be surprised at the options that come up.
Things look bleak but stay strong and have hope. You will be ok xx

marimeifod Fri 20-Dec-13 23:29:58

Oh yeah and you need to make plans for a holiday/time off as soon as you can. You are tired and drained and need your batteries recharging and that contributes directly to your feelings of frustration and hopelessness.

Sending you positive thoughts and hugs x

RhondaJean Fri 20-Dec-13 23:32:41

What seeps through your post is exhaustion.

But you are so nearly there. One last push and you will have this finished. Look behind you at the volume of work and stress you have come through and look ahead and visualise completing this one last piece of work, successfully completing your whole course, graduating. I think your exceptional circumstances make it 100 times harder but DH and I have both studied with small children and full time jobs and for both of us it was the very very end, the bit you think will be easy because you are almost there, that was the worst.

I know you can do it.

I am so glad your sons nerve problem has been diagnosed as well and hopefully he is getting proper pain relief for it.

Wolfiefan Fri 20-Dec-13 23:33:28

Can you get any respite care at all? You certainly sound like you should qualify. Anyone else that can help out?

aroha77 Fri 20-Dec-13 23:34:27

Just wanted to add my support as well. It sounds like you're doing really well in a very difficult situation. I agree that it wouldn't be in the uni's best interest to let you fail so I'm sure there will be a way through it.
All the very best xx

Would it be worth trying not to focus on the 7th Jan as this big looming date ahead and instead break what you have left to do down into manageable portions? Then don't think of the whole, just each part at a time.

You are so unbelieveably strong to have got this far.

Livingtothefull Fri 20-Dec-13 23:42:56

Thanks so much marimeifod, I will talk to my tutor as that is a really good idea..I suppose circs are exceptional so I may get more help than I realise....I knew about DS beforehand but was not prepared for how hard it was going to be during his recovery. I want to get this study complete though ASAP so I can move on.

I am not sure when I can get a holiday as DS would come with us, we can't get any respite care as a health & safety assessment needs to be done following his surgery, before the respite family can have him. This will take a lot of time (long story). We are planning to have a good break in the summer, assuming I am working by then...

condaleeza Fri 20-Dec-13 23:44:29

I really feel for you. You are having to deal with things most of us never have to face. Seeing a DC in pain is always truly awful for a parent. I suggest postponing job seeking until after the masters deadline and focus on the masters. Maybe do a sort of timetable for the next 2/3 weeks and slot in all the chores and activities etc you have to do and then allocate some time slots to the module. I tend to work 'backwards' with impossible deadlines: what is the minimum I have to produce, break it down into chunks and try to do a chunk in each time slot. This helps (to some extent) prevent me falling into the procrastination trap or writing and rewriting the introduction endless times.......
And you're doing a lot better than some of us who haven't got anywhere near completing a masters.....

RhondaJean Fri 20-Dec-13 23:45:25

Wanna is right, presuming it's an essay or something with a word count you have to do, break it into blocks of 250 words and do one a morning and one an evening, or something like that that works for you, don't look at the whole thing.

Livingtothefull Fri 20-Dec-13 23:49:37

I crossed post with many of you....thank you so much for your support, I think you are seeing what should be staring me in the face. Yes I will contact my tutor re the difficulties I am having, but also want to do one (really hard) push & get this course done. If I do it, pass the course, it will be so wonderful, I will be walking on air.

Yes DS is on the appropriate medication but has only just been put on it and it takes a while to kick in. I dearly hope he will be out of pain soon.

Livingtothefull Sat 21-Dec-13 00:07:32

I think that you are right condaleeza that I should focus on the Masters this year rather than the jobhunting...so will not actively look for new opportunities though will follow up any opportunities sent my way by job agencies I have previously contacted.

It is great advice to break down the MA assignment into tasks/word counts. I will try to do this & also try to quantify the amount of time I have to complete, to ensure it is feasible (DH has offered to care for DS to enable me to study, realistically I will need to take a few days off over Christmas).

A plan of action is emerging which is really positive.....the more I am in 'doing' mode rather than 'thinking' or worse 'fearing' the better.

AnUnearthlyChild Sat 21-Dec-13 23:21:56

I second the advice to always, always tell the university.

Face it, they don't want you to fail - not when you are so obviously capable academically. it makes them look bad.

I think you might get more help than you realise

Livingtothefull Sun 22-Dec-13 18:51:33

Thank you Unearthly, yes you are right I need to contact the university....will do so tomorrow though the message may only be picked up after Xmas.

Hopefully there will be some leeway for me in my situation....I know I can pass this module but my circs are very special. I agreed the January deadline in the mitigation process but did not know DS was going to be in so much pain.

Livingtothefull Tue 24-Dec-13 15:25:38

I am having a wobble today...am feeling really down. Contacted the UNI but won't be able to get in touch with the tutors till after Xmas.

Last night I had no sleep...because of the storm first of all then when that died down DS woke. He was really aggressive, swearing and lashing out as he is at the moment; when he is having a bad time nobody is allowed to have a good one.

DH left after his sleepless night, at the end of his tether, to go to work at 6am as usual. I told DS how upset I was with him, that I expected him to behave himself that day and apologise to his DF when he got back. His response? 'You f---ing bitch'.

Took him to supermarket for last minute Xmas shopping. 1 wheelchair trolley there which was broken so had to wait ages to sort this out. DS joked about running people over with the trolley. Some people in the way so asked DS to say excuse me. He said 'Move you idiots'. I just snapped and told him I was disgusted with him, that he could forget about a nice Xmas if he carried on with this behaviour.

Got the bus back home. The driver put the ramp down then it wouldn't stow away again so more delay. Glares from other passengers.

DS still screaming, demanding and swearing at me as I write.

Rant over. I am in a far from Christmassy mood at present as you will have gathered. I am not proud of any of this. I don't know how I am going to do my studies today while this is going on, don't feel I can face it and feel so guilty. I don't see when I will ever get a new job. I am still waiting for DS to get better and get back to normal, this isn't like him.

HellonHeels Tue 24-Dec-13 16:03:53

Horrible day for you thanks

Could DS be having some kind of side effect to the medication if it's new for him? Does he need to be in the same room as you or are you able to leave him to calm down alone for a bit just so you can have a break?

For your course, make sure DS's doctors note down his behaviours, especially the not sleeping as this has a huge impact on your ability to study and you might need the medical notes to evidence any request for deferral or extension. I'm wondering if you might be able to defer your final module until DS is more stable and his pain is managed. I know you've had an extension but deferrals (or mitigation) are separate from this.

As well as speaking to your tutors, there should be a student union advice service who can support you but this will be for the new year. Give yourself a couple of days off over Christmas, then see how things are.

Really feel for you xxx

Tuhlulah Tue 24-Dec-13 16:05:09

Living,
You are one of life's heroines. I mean that truly. I too have a 12 year old DS, and he is healthy and happy, and I worry about so many things needlessly and take so much -like his health and well being for granted. Your post woke me up. For that I thank you.

You must be exhausted. This is what i think:

In my view, concentrate on finishing the masters. That is your aim.

Deadlines -aim for 5 Jan, so if you make a mistake, you have 2 days to correct it. Save everything constantly. Back up. Don't leave having a completed document in your hand until the last minute as things can come up, etc. Aim to complete at LEAST the day before it's due to be handed in.

Give yourself small deadlines and stick to them. As someone said, if it's 250 words in the morning, and 250 at night then do that.

Look at what you need to do. Divide it up into manageable sections. Set deadlines to complete each task and don't stop until you complete each task.

Get out of the house for at least 30 minutes by yourself every day. Walk. Breath. Switch off as much as you can.

Reward yourself for each deadline you make. Obviously something small, but whatever you like and can manage.

Good luck and be kind to yourself. You must be an incredibly strong person to care for your son the way you do.

And merry Christmas. Now get out that computer and get off MN! Get to it!

Consider this a kick up the arse.

XXX

Livingtothefull Tue 24-Dec-13 17:08:53

Thank you both for your such kind words; also for the wake up call. Yes I will keep going, there is no way I am going to get this work done except by hours of excruciatingly hard graft, I know that. I have done some study so I have been good, & will do some more. It is difficult though as DS is still screaming and demanding, DH is catching up on sleep now he is back from work.

I believe this is doable and I know I am so tantalisingly close to finishing, I will feel so proud of myself when it is all over. But I can't believe how hard life has got. I tell myself it has to get better soon.

I suggest: No studies till after Boxing Day.

Post on the Student Board where you'll find study buddies and strategies. Have everything set up somewhere so you can start if the mood comes over you. Small steps.

Doing my MA I had an essay to finish that I literally had to drag out of myself word by word. Collect any sentences that come into your mind in a dedicated notebook. You may find that the work is half there in your head if you can just capture it as it peeks out at you.

Livingtothefull Tue 24-Dec-13 17:23:43

Yes you are right Tuhlulah I am backing up and copying everything I do and aiming to have it ready a few days early....ideally I will have time to complete and put it by for a couple of days then do a final check. If circumstances will permit! I learned my lesson when working on a final project & the draft got lost....never forgotten my heartbreak at realising hours& hours of hard work had just vanished.

I feel like nobody's heroine at the moment not even my own. I am a hate figure/object of resentment for DS as he associates me with all the pain he has been through. DH has only so much energy to spare in appreciating me, what with being sole breadwinner, caring for DS & also his DM who has dementia (eg nobody else is visiting her tomorrow in her care home so we will do this; I am used to DH sorting things out for everyone in his family. In the words of his SIL (to DH): 'Everyone of us in the family incl Living look to you to sort things out for them, you are our rock'. So I am regarded just one other burden for him, rather than his main support).

Sorry I am off on one again! When DH wakes up maybe he can help me with DS and we can get on and have a nice Christmas.

Merry Christmas also to you all.

Tuhlulah Tue 24-Dec-13 18:22:42

SIL probably doesn't want to acknowledge you are also doing more than your fair share, because she might then have to face that she does less than she does, and less than you, I guess? Let it ride. Getting angry is a waste of time. I heard a lovely story about how holding on to anger is like holding a burning hot stone in your hand because you might want to throw it at someone one day (if you get my drift).

You and your DH must be incredibly dedicated and kind people. You shame me. Compared to what you do every day, a bit of final work for your masters is nothing!! But you just have to get on with it. You have to do that hard graft. It's bloody hard. I know.

So maybe, as the sparkly cat above suggests, give yourself some time off, and resolve to get on with it on Boxing Day. Could you get up an hour early to put in an hour. When you can't do a hard bit, do something else -check your bibliography, look at contents pages, appendices, etc. Don't be idle for the study time; if something is too hard do something else which is simpler.

And yes, if there is a students' support board, maybe try that. But I think you should just do the bloody thing! Nothing will get it done except your hard effort.

I'm sorry you had such a shit time at the supermarket and on the bus.I have nothing to say about your DS, I know nothing about his condition or what life must be like for him, or you and your DH. But surely people don't look at him or you and judge? And I should know, I'm number 1 Judgement Cow. People probably think how hard life is for you all.

I hope DS gets into a better mood soon.

XXX

I admit I was slightly wary of suggesting a distraction the Student Board. But students urging each other to get off MN get on with the blooming thing can be a a bit of a help.

Tuhlulah Tue 24-Dec-13 18:54:59

Sparkly, yes, I know what you mean. Support she does need, distractions she doesn't. MN in itself is a distraction. I suppose she could post on here to say that she has met the minor milestones per day, and we can congratulate her?

What do you think of that, Living? Sort out a plan, tell us what to expect and when, and then post on here to say how you're getting on? We can then give you a bollocking or offer our congratulations?

(Maybe you can reciprocate -I am on here instead of writing up my doctoral dissertation, due last October!)

cjel Tue 24-Dec-13 19:03:05

Don't have any real advice, but understand the panic of deadlines as I was doing a college course while leaving H and moving!
Just want to say that I hope and pray you manage a good christmas and DS settles to give you more peace.

Livingtothefull Wed 25-Dec-13 00:55:16

Thank you all so much, I appreciate your messages very much, more than I can ever explain.

Yes I need to get this project done somehow......it exists in my head already but the problem is changing the medium. How to render it from intellectual rivulets into precise, structured words. I think that I need to take a day off tomorrow as we are spending some family time.....but from Boxing Day I just need to start getting the thing done. I think that setting myself goals each day is a really good plan....today I have spent getting my head around what I want my project to be about, defining the meaning.

I am scared that I am just not up to this, that I will be unmasked as an intellectual fraud not equal to the tasks I have set myself. That everything I do, every word I utter, screams ,inferior'. I wish I could be rid of that fear at least.

But you don't realise what it is like having a DC you have to do everything for. I feel that I have to be the person that DS is unable to be. I know I will always have to support him, be his advocate, spokesperson, benefactor. I feel unequal to it. I am a run of the mill, inadequate person; he deserves somebody really special, instead he has me.

thanks tululah for your suggestion that I set goals for myself and report how/what I have achieved. I will have real serious think about that, how that could work. I know that ultimately this project takes whatever time & effort it takes to complete.....hard to put a time limit on it or break it down into subgoals. I am always happy to support & assist anyone who is trying to study, work and achieve. I don't need a quid pro quo, please just ask.

Please wish me & my little family well tonight.

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