Posted on 10/11/2011 11:12 AM
sent registration request; hope to join you all over there.
Posted on 10/11/2011 10:28 AM
I have been talking to some people at BASIC...
It seems (some) staff & (some) clients feel as if the finished programme cut too much of what was actually filmed, showing too little of the breadth & depth of the various things going on there (& some may be just a bit peeved that they were filmed but didn't appear...).
I can understand the frustration - but also see that from the programme-makers' viewpoint they have to fit what they can into a small space!
It may get some people to look at BASIC's own website (or even go to visit) and could result in greater demand for their services as well as a (probably very short-term) rise in donations?
Posted on 10/11/2011 10:02 AM
I did one of those test questionnaires & it has come out INTJ... see, I told you I was odd.
At least if Debs' comment about it being very unusual for females is right, we both are!
As far as being alone goes, most of the time I am perfectly OK without company (though weird things happen when I am mentally ill & swing from wanting constant reassurance to wanting zero contact with anyone at all for weeks).
I have lived alone most of my adult life, been on several holidays both in UK & elsewhere in Europe by myself and rarely feel lonely.
Posted on 08/11/2011 11:23 AM
I had a reassessment a couple of months ago (sounds like just the same thing).
Unfortunately my direct payments were cut from 3.5 hours/ week to zero. This means that I am now paying my PA from my (LRC) DLA and a bit of my incapacity benefit.
I was getting support for the very things that you said your LA no longer pay as well as help with organising & keeping up with household chores.
Posted on 07/11/2011 10:07 AM
There was a programme on Channel4 last night (The Secret Millionaire, available at Channel4's website via 4od to "catch up" http://www.channel4.com/programmes/the-secret-millionaire/4od#3253187 ) featuring BASIC and two other local charities.
If you would like to see some of the things that BASIC do, check their website http://www.basiccharity.org.uk/ & take a look at the programme.
I attend BASIC regularly (not quite every week) & find their help & support for people with brain injuries invaluable. A link to this was sent to me by another client (obviously I wouldn't have known otherwise as I have no TV).
Hope this might be useful to other people with brain injury/ spinal injury/ friends & families, as well as maybe interesting to other people.
Posted on 06/11/2011 6:16 AM
Thanks everyone for being here. Have been reading intermittently.
Still having probs with sleep, etc. but still keeping up the "eating 3 times daily & doing at least one thing each day".
Yesterday's one thing was a fairly long walk and I took a sleepy pill last night - for first time in many weeks I actually slept from about 11pm to 7am. Other nights I have been waking once for an hour or two with tablet or three - four times without, so getting increasingly tired - the walk was very hard work due to fatigue (but I was really hoping that adding physical tiredness and zopiclone to the sleepless fatigue would = sleep).
Posted on 06/11/2011 5:16 AM
Reply to Jen17 (06/11/2011 7:50 AM)
Thanks for replies and advice.
Yes it is now happening I have started being so fatigued am sleeping a lot of the day and in an awful lot of pain.
Unfortunately yesterday little Sam was taken very poorly. He had a very high tempature and was very floopy. They discovered he has an extremely bad infection, in fact it is a worying time as it is touch and go.
They believe the infection is in the belly cord as he has a drip in there for nutrients and vitamins, it has been weeping, they have stopped his feeds, he had a lumbour punture yesterday to see if they can def pin point the infection area, but the most important bit is that we wont know for 48 hours if the infection has spread. If it hasnt he should ok,if it has spread he will have a major fight on his hands!!!!!!
Will let you know how he is doing.
Hope Sam recovers quickly from the infection.
All the rest of the family, remember to take best possible care of yourselves (and each other).
- hugs for Sam, his parents & grandparents.
Posted on 06/11/2011 3:59 AM
|Reply to oldtone27 (05/11/2011 12:14 PM)|
How about 'Haphazard gathering'
Random Harvest by James Hilton (no, I haven't read the book or seen the film - heard of it as the author was born in the same town I was)
maybe try "gloomy dwelling"
Posted on 28/10/2011 8:03 AM
Saw (a different) GP yesterday - he did appear to be listening properly and undersatanding that my sis & I are trying to catch things before I get to the not eating/ washing/ sleeping at all stage.
He feels that he does not have the experience/ expertise to mess with my meds (not long qualified, minimal mental health knowledge) but isn't willing to leave it at that (sensible man says he has limitations & paases it up to someone who may know more - he has the begiinings of an excellent GP, I think).
He will do a referral to commumity mental health (non-crisis) team; that could be several weeks but it's probably sensible to see (hopefully a diffrent) psychiatrist sometime.
I have remembered (I am hellish slow ATM) that the brain injury charity I attend most weeks provide counselling &/or CBT - that's probably quicker & better for me than mainstream psychological therapy, so am on waiting list there.
GP also recommended I see the senior doctor in the practice, who has mental health special interest (& personal experience I think) - that will be in a couple of weeks, so all I have to do is take a sleepy pill evry few days & hang in there persistently feeding myself (though not hungry)for a while; & hold on to the knowledge that it always does get better.
Everything is much harder work than it should be just now, even when I raise the motivation to do minimal daily living stuff - but I still know it gets better in a while & it is going to be sorted.
My sis told me that it was in fact her OH who hung on the phone (engaged/ redial/ engaged/ redial...you are number x in the queue...) to make the latest GP appt - what a fabulous b-i-l!
Thank you all for being here - if I am reading & not posting much in next few weeks, just means I am prioritising food & daily living stuff.
Posted on 27/10/2011 3:06 AM
My sister did call GP surgery yesterday evening & got an appt. for 2pm today.
I had asked her to do it because I know that you have to phone at a certain time for next-day appts. - then keep on redialling for ages before you get to wait in a queue... I figured if I tried this myself the state I'm currently in, I would probably be sobbing uncontrollably by the time I got through & make no sense at all; it's not easy to make an appt if you cant make yourself understood.
No sleepy pill last night, slept about ?half past midnight to about 4am but at least I won't be too heavy/drowsy to speak when I see doc. (yesterday I was very heavy/ slow/ uncoordinated until mid-afternoon). Will take one tonight again.
Posted on 26/10/2011 8:33 AM
Been struggling for a good few weeks now - stll doing most of the stuff that's in the diary & involves contact with other people but without any enthusiasm or enjoyment most of the time and it's a huge effort (about 3-4 things a week taking maybe 2-3 hours each, I don't work).
Sleep pattern all wrong (my normal is go to bed 9:30-10pm, asleep by about 11, wake about 8-8:30am) - recently I've been going to sleep as normal, waking at 3am, 4:15, 5:30, 7; at which point I will try NOT to go back to sleep as it'd mess up the following night... This has been happening with increasing regularity until it's pretty much every night.
Had quite a number of teary episodes (just sitting reading or with radio on, nothing upsetting going on, suddenly weepy).
Reading easy stuff that I have read before, not new stuff...
I figured this probably the start of one of my (cyclical) depressive episodes (get me, picking it up while still functional enough to go for help!). Others think same (my family & staff at the brain & spinal injury centre), so my sister made me a GP appt. for Friday.
GP asked for some blood tests(
) & ECG (?
), also made appt for me to see CMHT that evening.
CMHT gave me a script for 3 nitrazepam tablets (had to collect it Sat as local hosp'l pharm. already closed for w/e) to help me sleep & promise of psych appt in a few days. The crisis team contacted me over weekend and on Monday (they must have thought I am unwell, I suppose).
Took 1 nitrazepam on Sat after tiring day - no effect, sleep as described, woke several times. Took 2 on Sun after discussion with CMHT, only woke once during night (great improvement, but obviously can't/ won't keep taking nitrazepam even if I had any more).
Saw psychiatrist yesterday (my sister accompanies me to appts as I have memory problems, she had also been to GP & CMHT with me). I haven't been under care of mental health services since my last episode about 3 years ago, so obviously it's a new doc who doesn't know me.
Both me & my sister got the impression she wasn't really listening, was in a hurry to get answers, get through the appt (like if I was slow she would ask my sis) and not taking on board that I have more than one thing "wrong" or that I know plenty about depression (I'm an ex mental health nurse as well as my personal experience). Our aim is to try to get help before
I get to stage of not washing/ dressing/ eating at all, she says they can't do anything as I'm not in crisis & they are the crisis team. Also I am still on max dose mirtazapine (since last episode 3 years ago) so she says they can't alter my antidepressant meds. I have a few zopiclone 7.5mg tabs that she gave me & she sent a referral back to GP (she kept saying "we are crisis team, refer you back to primary care").
Took first zopiclone last night, made me feel really heavy before sleep; woke just once but just coming round from the morning-after drowsiness (did get up about 8:45 this morning after listening radio for a while).
GP surgery just phoned, said they have been speaking to my sis & can probably offer me an appt next Thurs (3Nov) - I just started on another crying fit & said they should make appt when she can come because my memory is poor when I'm well, worse if I'm not - they will ring my sis.
So on Friday it seems I was sick enough for the crisis team to want to be in daily contact (and they wanted to know about me hitting myself, which I admitted I do as a way of moving some of the pain to the outside; they brought that up with my sis in the room & she knew nothing of it of course. Thanks to whoever it was who posted the tips about elastic bands
, etc. - really useful & has to be much less harmful than hitting my head several times daily as I was before I rememebred that helpful info)- now although I am no better it will quite likely be over a week before I get to see anyone (?!?
As far as I can see zopiclone will treat the sleep disturbance that is a symptom of depression (and I will not
take them every night, I expect the 7 they gave me to last 2-3 weeks) but no-one will treat the depression until I am actually in crisis. The GP has asked family, brain injury charity and myself to look out for signs of looming problems as depression is a recurrent condition (about every 3 years, give-or-take a few months) for me - this is the response when I do.
I'm still functioning well enough
(thinking clearly enough) at the moment to see that this is a cycle, it will get better in a few weeks/ months, it happens every few years - but when I get really low I will not seek help, cooperate well with anything offered, feed myself, wash and I genuinely believe at those times that it will not ever get better and I would rather be dead (but by that stage haven't the motivation, energy or planning skills to fix it).
I don't get it really - if you are not at that stage yet, it's not possible to get help to prevent it getting that far. Perhaps my sister is having better success getting a GP before next week, who knows?
Sorry for the long rant, only took about 2 or 3 hours to write...
Posted on 22/10/2011 12:47 PM
Thanks for the pics, Pen - hope you are OK tomorrow after your sleep.
I was in Manchester, but without a camera or a notebook (not functioning too well just now, not organised enough to take stuff with me ).
In M/cr it was a static rally in front of the town hall, where a stage & mic had been set up for the speakers. Banners, placards, etc. a-plenty as well as individuals not part of organised groups.
As I have no notes, I can't name most of the speakers or the singer - the local MP (central M/cr) did speak, there were some actors of the telly (Coronation St., the only one I recognise is Julie ?Hesmondalgh - but then I have no TV).
Most speakers were non-famous disabled people (it was our rally, after all) but Kaliya Franklin is the only name I remember (I already know her name from the Broken of Britain & I guess she will post a proper write-up of the M/cr rally there).
Posted on 18/10/2011 1:53 PM
Hello Nicey & welcome. Look forward to reading more about you.
Enjoy looking around the messages - there's a "getting to know you" thread with info about some of us.
Posted on 18/10/2011 1:41 PM
Will anybody be able to make it to any of these on Saturday?http://thehardesthit.wordpress.com/octoberaction/
They are scattered around the country & will pass by unnoticed unless at least a couple of hundred people turn up at each one.
I know not everyone is able to get to city centres easily & not everybody feels comfortable in groups - but if those of us who can do join we might help to get the thing noticed at least!
Posted on 17/10/2011 12:25 PM
Norrin, I absolutely agree with the advice to see your GP & tell them how you are feeling. I know it's often not easy to admit that you feel you aren't coping well - if you tell your GP what you said in your initial post about being unhappy & like you're unable to see a way through your problems, they may well be able to help.
Kizzy's point about this board & the supportive community here is really good, too - I know that just reading stuff on here has helped me hugely when I've been struggling with depression (thanks, guys; just reading & knowing you are here helped even when I was just "lurking" on the old board
- that ain't a towel, it's a comfort blanket!), so even if you can't face talking to your doc, or you don't think they are helpful, please keep in touch.
Posted on 17/10/2011 10:11 AM
Reply to Jockice (17/10/2011 4:53 PM)
"Who is that handsome young man with the lovely grey dog??
usertype:3 tt= 1
Handsome? Young? Man? None out of three ain't bad,
PS, the dog's Rita, my sister's latest pup. She also has a legendary terrier called Brock.
If you are not a man, I think we should be told about the huge advance in cybernetics or space travel
that brought you to Earth...
Apart from that, you are neither old nor ugly (though I myself am not old, young, beautiful or especially ugly... there are lots of in-between states!
Posted on 17/10/2011 8:18 AM
Reply to sofie2 (17/10/2011 2:39 PM)
It's the same as what you'd get on IS - including the premiums for disability, etc.
That may be true for "full help" (though I'm not entitled to IS so I have to pay some rent & council tax from my IB - and I *do* have a certificate for full help, so maybe it's not that simple...), but there is also the possibility of a certificate for partial help - which would at least help towards dental costs, glasses, etc. (and may also reduce the cost of a pre-payment cert. for all I know).
I think unless we have someone here who has worked for NHS Business Services/ Prescription Pricing Authority in the right department the only sure way to know if you are entitled to help with health costs on income grounds is to send an HC1 and await an answer.
Posted on 17/10/2011 5:55 AM
|Reply to SunshineMeadows (17/10/2011 12:38 PM)|
I have checked the criteria for free prescriptions.
NHS Tax Credit Exemption Certificates
For queries about your NHS Tax Credit Exemption Certificate:
I rang the number and chose option 1 and was told that in order to receive the exemption family income needs to be less than £15,276 a year.
From a personal point of view this makes claiming difficult for me because if Mr Sunshine does not have as many sick days in 2012 family income should be around £16,000
You made a good point about letting the tax office know, I got a small refund.
I was thinking of the low income scheme, which is separate from the tax credits bit, it seems (couldn't make it simple, could they?) - they don't say on the website exactly how much income is "enough" (because they take into account all your circumstances), but it's not an all-or-nothing assessment. You may get a certificate for "partial help" even if your income is too much to get "full help".