Update

[Mumble]

Hi everyone

 

Just to let you know that I'm ok-ish, well at least going in the right direction now, but it's going to take some time to get the bouncy Mumble back. I'm going to concentrate on making sure I'm well enough and fit enough for my Hike the Pike - this week has shown me we desperately need adult services for ASDs and if my little bit can raise a little money to help then that's worth while.

 

I'm struggling at the moment with the thoughts I have in my mind - at the moment I have two competing minds - one telling me jump in front of the train, end it all, take the pain away, and the other trying to tell me not to be daft and that I do really want this PhD and that things can be better with help and support. It does anger me however that it takes me getting to crisis point before anything steps in to help (and then in addition it takes a wonderful person - you know who you are - to get people to begin to listen and to actually listen to what it being said rather than what they think is being said).

 

I've almost worn out the bottoms of my shoes wandering round and round London trying and failing to ignore everything going on in my head. I have to say you do meet some 'interesting' people in the parks after dark (and it's ###### cold too). I'm terrified of ending up like some of these people - of not having suitable accommodation, a job, a future, people I can rely on. At the point I am at now things need to happen so the state I got into doesn't happen again - it's going to take a good while for my body to physically repair itself (I hasten to add that I was a perfect patient in hospital and it wasn't me freaking out over the needles and drips - honest ) as it seems walking around in winter and not eating or drinking anything for 4 days isn't so good - but I think it's going to take much more support and effort to begin to sort my head out and to get me to a stage where I can see a future positively and some things definitely need to change - accommodation and social support being key priorities.

 

I won't be going to uni this week other than to see my tutor and my GP to begin the process of sorting me out. I feel physically very very weak and need to work on the basics of human survival rather than academia for a while. Means I can spend some time bugging all you lot and working on my rattle-snake impression with the various pills and potions I'm taking I want to thank all of you for your messages of support and your PMs. It really means so much to me to know that people, many of you who haven't even met the real me, care so much. It's the 'care' element that's stopped my 'jump' mind winning - and my 'jump' mind is not happy with my supervisor for telling me he cares - it's something I've found so difficult to have people tell me they care - I haven't had that growing up and I'm not quite sure how to deal with it so sorry if my responses are wrong, but I mean it when I say thank you - it has made a difference, and without exaggeration a difference between me being here typing this now and being dead or locked up.

 

I have a long long way to go but I can begin to see people thinking that this is something serious and its making people realise that they don't know what to do at present that they need outside help too to support me. There's a lot of work to be done on educating people who support me, and I need help to achieve this without the need for crisis and there will probably be some hard decisions to make along the way. I perhaps need to learn to be less stubborn and to let people in earlier too.

[Bagpuss]

Mumble <'> <'> <'>

[Guest Lya of the Nox]

glad u posting

u know where we are if u want a break or day outs

lvs

x

[mossgrove]

Glad to see you posting again.

 

Take care.

 

<'>

 

Simon

[brooke]

mumble <'> <'> <'> I really really hope you feel a little better soon im so sorry you are feeling low <'>

[Bard]

I perhaps need to learn to be less stubborn and to let people in earlier too.

 

<'>

That comes with beginning to believe that people care.

Glad you're digging your way back out of despair, it takes a lot of time and effort so be generous to yourself.

[JsMum]

I am soo pleased to see you have replied and that though its going to take the right support services and the right people to help you I am absaloutly sure that you will get throw this really difficult time, I am not so sure of the pills you have to take, me personally think its practicle support that you need, I am sure that you would really benefit from some councilling as it will be very painful for you to realise that maybe those responsible for you should of indeed cared about you, and so the fact you have come throw this as an adult is testimonal to your courage and inner strength.

 

I really hope that the help is there for you where you live and by the sounds of it there is defo people in the here and now who do, yes that in itself is going to be a challenge for you, but if you can do this it will give those who should of been responisble for you as a child a massive loss because the people you let in now will have a magnificant gift, and those responisble left out.

 

I really do admire your honesty and its a gift that you have shared all this with us, for me a real friend is those who are honest and true and that already you forfill.

 

Please do look after yourself as painful as it is to feel love and the nice things of life it will slowly begin to feel natural and you will let it in more.

 

JsMum

[Kathryn]

Mumble,

 

Good to see you back, and I hope your life now takes a different, more positive turn after this crisis. I believe you can and will get your PhD if that's still your goal, but you need to be kind to yourself for a while.

 

So look after yourself well, and take whatever support is out there. Remember, you need to be fit and well for Greenwich in July - we're relying on you. Who else could possibly lead us up the right hill?? <'>

 

K x

[pearl]

Glad to see you back on here love. And in a better frame of mind. Thinking of you <'>

[barefoot wend]

Mumble

 

Relieved to see you posting again. You were sorely missed.

 

Barefoot

[Suze]

hugs to you mumble, glad your back posting again, please take care , you matter <'>

[Kinda]

Hi Mumble

 

And welcome back we all missed you and its good to hear that you now have a plan in place which includes being nice to yourself.

 

Following my own illness while studying I learnt how to look out for signs that I was getting too stressed and I developed plans to try and take me out of those situations. I'm now a lot more aware of how issues can build up and dominate my wellbeing.

 

Its good to hear that people connected with the university are now taking measures to help you and you are correct in your belief that they do not understand.

 

When I went to Birmingham University to lobby for help for my son it was obvious to me that the Special Needs co-ordinator had no clue as to the issues that my son faced. At one stage he told me how could he when he had hundreds of these things (statements of special educational needs) to deal with.

 

At this stage I got annoyed because while he seemed to see them (statements) as hinderances I saw them as summaries of students lives with all the hurt and pain that went along with the contents and that they needed to be respected. We were then asked to explain how they (The University) could help my son.

 

In the end it worked out OK for him but again they really haven't a clue as to the issues students with AS have to overcome to arrive at the end of the journey, if you were in a wheelchair they would understand of course!

 

Anyway now you can look forward again and plan your career etc and hopefully the support you need should now be put in place.

 

Its others who have let you down and don't blame yourself for any of it.

 

Take care

Edited March 10, 2008 by Kinda

[loobylou2]

<'> So pleased to see you back Mumble. Hope that things start to get easier for you very soon <'>

[smiley]

<'> <'> <'>

[Mumble]

Thanks everyone Thanks for the PMs - I'm not ignoring anyone, I will try to get round to replying, just everything's taking a lot of time to do - seems my brains telling to body to do stuff and my bodies saying, huh? did you say do something - ok, in a minute!

 

I'm really really struggling with eating at the moment. I know I have to because I don't want to go back to hospital, but eating is physically painful, everything is making me feel sick and everything tastes horrid (yes, I've even gone off chocolate ). It's not helped that if I find something OK - I was trying fruit smoothies - stuff always gets nicked from our communal fridges (I can't have a fridge in my room because the 'humming' - even of little travel fridges - drives me mad). Any ideas for stuff that's 'easier' to eat would be appreciated.

 

I think I'm seeing my tutor tomorrow but I'm not sure - one thing i need to get across to them somehow is that I really need, especially when I'm like this, to know exactly what will happen, when and where - I don't think they quite get how important this is yet. What I don't want to do is waste a journey - not quite sure how I'm going to manage getting in actually - it took it out of me completely just walking to the dining hall this morning

[Clare63]

Mumble so good to see you back, it ain't going be easy Hun so be gentle on yourself, one step at a time. Hope you get the real help, support and understanding you need and always remember all us guys are here for you too.

 

Can't really think of anything to suggest re eating at the moment, but guess you could pop your smoothies in a flask they are supposed to keep things cold as well as hot.

 

<'> Clare x x x

[forbsay]

<'> <'> <'> <'> Mumble

[Kathryn]

Shame about the smoothies as they're energy giving and nutritious - what about a little cooler bag you can keep in your room and pop ice packs into? It would keep stuff cold for a couple of days. Failing that, a stock of fruit which is easy to eat, like grapes and bananas, is a good standby, and what about dried fruit like apricots and figs?

 

When I'm anxious my appetite completely goes, and at such times I find vegetable soups are the best thing for me personally - fairly bland, but filling. Carrot soup works for me! You can get some good homemade tasting ones in tins and sachets so no need for refrigeration.

 

Food choices are very individual, and what I like you may hate, but those are just a few ideas.

 

K x

[bikergal]

Take care <'> <'> <'>

[Karen A]

Hi Mumble.I am glad you are back around here again. <'>

One option if you cannot use the fridge...[.I remember it well..it is 20years since I was in a accomodation with a shared fidge and things walked then] is to look in the long life section in the supermarket.Yoghurts and soya drinks and desserts are available as sweet options.In savoury options there are some savoury casseroles and stews in long life packs too.

I think it is possible to buy a cooler box that plugs into a socket and it may not buzz like a fridge so that may be worth investigating.Karen.

[smiley]

Mumble - could you tolerate a smoothie maker noise for a minute or two? You could ask your tutor to get you one (not sure if this is possible??) and then keep fruit in your room - and make your own smoothies. Another idea might be good multi-vitamin tablet to have just while you're not feeling hungry - maybe tutor could get those too? (Or maybe ask your sister to get them?)

 

I struggle with speaking when i'm stressed - could you type out or write down what your feeling and exactly what you want your tutor to do for you. Maybe just copy and paste some of the things you've said on this thread? And possibly putting 'give me a couple of minutes to de-stress after getting here!' would make her back off and read what you've written while you orientate yourself.

 

<'>

[Mumble]

Thanks Smiley

 

I've found a temporary solution to the fridge nickers - I've decanted the smoothie into empty plastic water bottles - no ones touched it not knowing exactly what it is - don't go tellin' them

 

I struggle with speaking when i'm stressed - could you type out or write down what your feeling and exactly what you want your tutor to do for you. Maybe just copy and paste some of the things you've said on this thread? And possibly putting 'give me a couple of minutes to de-stress after getting here!' would make her back off and read what you've written while you orientate yourself.

Aaaaarrrrgggghhhh. I'd forgotten that tomorrow was tomorrow. I'm loosing track of what day it is at the moment. I need to start writing stuff down now cause speaking ain't going to happen I'm really worried about even getting there actually - I'm very very shaky and lacking energy - walking to the dining hall is really tiring and painful - tomorrow I'll have to walk to station, up station stairs, two trains (with more stairs) then walk from station to uni Oh help, my mind had carefully blocked tomorrow out of my worries :tearful:

[Karen A]

 

quote]I've found a temporary solution to the fridge nickers - I've decanted the smoothie into empty plastic water bottles - no ones touched it not knowing exactly what it is - don't go tellin' them

 

 

Mumble...you just reminded me of one amusing incident from my younger days.

Whilst sharing a fridge in a nurses home a bowl of mine and contents was stolen from a communal fridge.

I was not best pleased and wrote a note which I posted on said fridge

''To the person who stole my bowel I am very upsett.That bowel was a present from my father and was impotant to me.Please return it to me as soon as possible.''

I could not understand why my OH was so amused.

Spelling never was my strong point.

[oxgirl]

How about soups, Mumble, cuppa soups even. They're easy to prepare and soothing to consume and give you a nice warm, comforting feeling inside. Hug-in-a-mug, as they say. <'>

 

~ Mel ~

[mumble_rocks]

Hope things start sorting itself out soon! Could you ring (you would be braver then me) or email the tutor?

[Tally]

Mumble, the best tip I ever heard for fridge sharing . . . green food dye. No one will go near anything you've dyed green

 

I struggle to eat when I'm in a bad way too. It's important that the things you do eat are as nutritious and calorific as possible. The smoothies are a great idea. Yoghurt and jelly might also be good. (If you bought a big pot of greek yoghurt with honey and dyed it green, I bet no one would touch it!) Milky drinks too, you can often buy UHT chocolate milk in cartons you wouldn't need to keep in the fridge. If you cat eat boiled sweets, it doesn't feel like you are eating anything, but at least you are getting some sugar.

Edited March 10, 2008 by Tally

[smiley]

Aaaaarrrrgggghhhh. I'd forgotten that tomorrow was tomorrow. I'm loosing track of what day it is at the moment. I need to start writing stuff down now cause speaking ain't going to happen I'm really worried about even getting there actually - I'm very very shaky and lacking energy - walking to the dining hall is really tiring and painful - tomorrow I'll have to walk to station, up station stairs, two trains (with more stairs) then walk from station to uni Oh help, my mind had carefully blocked tomorrow out of my worries :tearful:

 

Sorry for reminding you <'>

 

If you don't think you can make it - don't go hun. I didn't realise it would be such a long trip for you - i assumed tutor would be near you. If you're feeling weak you need to rest for a bit. <'>

 

Can you email tutor?

[Mumble]

Sorry for reminding you <'>

That's alright Smiley - probably needed that kick.

 

I emailed my tutor last night - she replied to a different email - - and has said if I don't feel up to it today I could go tomorrow instead - thing is probably aren't going to make a miraculous recovery today and be fine tomorrow and spending a whole day stressing about the meeting won't help. I also need to see my GP urgently, but need support to make an appointment ( - can't believe they won't let me see a doc unless I ring up at 9am and speak to a nurse for assessment - makes my doc avoidance easy, but even I realise now I need to see the doc ) - I woke up in a lot of pain in the early hours and have been trying to sleep on and off without much success

 

I've got things written down - I'm just going to type my GP list cause I can't read my writing.

 

I didn't realise it would be such a long trip for you - i assumed tutor would be near you.

Well this is another issue to raise - I have NO support here, NO-ONE to ask for help and the environment is not one where I would approach a member of public for help. In rush hour it can take me up to an hour to get to my uni campus where my supervisor and tutor are and involves changing trains at a major London interchange. Even security where I live had no idea I am autistic until this crisis point

[Nic m]

Mumble, i havn't been around for a while, just nipping in and out (lots going on here) but i always look for your posts.

I am so sorry things are not great at the moment, hopefully it will get better soon.

Take care

Nicola

[smiley]

Oh pooh

 

Did you explain how you feel in your email to tutor? If you're anything like me you probably just said 'i can't make it' - and left it at that! Could you email her back and tell her what's happening and that you need help?? I know she isn't the best help in the world - but she may be able to do more, if you tell her more iyswim...... Maybe make a Doc appointment for you??

 

Still think getting in touch with a support group would be good - but maybe to scary to organise for you right now. Just maybe someone to contact in the future??

 

Remember Mumble - you are doing the best you can - you need some support now - so let tutor earn her money and get her to do it! <'>

[Mumble]

WOW! Feeling a little better but because of how low I was, it feels a lot lot better

 

I managed to go to the GP by myself. Had some trouble with the receptionist who really didn't want me to be there but eventually let me see a nurse. I'd written down that I'm autistic and can find it difficult to communicate my needs and the nurse was fantastic. I'd also written down what hurt, though given that I was doubled up and in tears this was pretty obvious.

 

I was taken in to see a 200-year old GP who was actually pretty good with me. Turns out the hospital had got it wrong, and that giving me morphine to shut me up masked everything which is why I haven't been getting better. I've now got more appropriate medication (lots of it ) and proper pain-killers and anti-emetics so I can actually eat and drink without pain. I've had a meal and feel so much better for it. It's going to take some time to heal and I've got to go back next week to look at other stuff as well, but it's probable that my body was so worn down already by the beginning of last week that what would normally manifest as feeling a bit low was experienced at such an extreme. Basically, if I'd had support in place and someone to say, "Mumble, you're not well, let me help you go to the docs" 4 weeks ago, all of this would probably have been avoided Boy, is my uni going to know about this

[Kinda]

Hi Mumble

 

Glad to hear you are making progress. I think you need to look forward now and only go back into the past to prevent it happening again rather than apportioning blame. Fine let the university know where and when they let you down but don't dwell on it unless you want to go formal with them. I think its more important for you to prevent it happening again and this should be your priority.

 

I know you are a very determined person with strong views of your own so hope you don't see me as interfering?

 

Take care and look after yourself.

 

Kinda

[pearl]

I was taken in to see a 200-year old GP who was actually pretty good with me

 

*nods wisely* from my generation then. You should listen to us, we know a thing or two.

 

Very very glad to hear you are feeling better, & that fighting spirit is back <'>

[Clare63]

Mumble ~

Glad to hear your are feeling a litttle better, one step at a time though.

 

Clare x x x

[Mumble]

Very very glad to hear you are feeling better, & that fighting spirit is back <'>

Thanks Pearl <'> I may even get round to replying to PMs now (promise I haven't been ignoring anyone on purpose)

 

one step at a time though.

Yep - this is what I need to be very careful of. I slept well for the first time in a very very long time last night and was feeling almost bouncy till I decided I would haul all my laundry to the laundry room this morning - oooouch!!!

 

If anyone knows any good remedies for a very dry throat I'd appreciate them (drinking lots doesn't seem to help) - it's a side-effect of one of my medications.

[Deedee]

Hi Mumble glad to see you posting again <'> For the dry throat try a drop of honey in a warm drink it helps usually when your throat is sore or dry.I like it in lemon tea

[Karen A]

Mumble chewing tinned pinapple may help your throat if you like it.Karen.

[Mumble]

chewing tinned pinapple may help your throat

:sick: :lol:

 

Sorry, thanks for the suggestion, but I hate pineapple. The pharmacist today suggested chewits (I rejected her first suggestion of chewing gum - yeuch!) which are helping a bit.