Been in hospital - low, scared, asked for help not got it

[Keziahhopes]

Had scary time: collapse, ambulance, resus, HDU, acute stroke ward.

Thankfully not a stroke, but have all the symptoms: slurred speech, one sided weakness, sight probs etc. Hospital were great, a neurological problem. Home now after lots of intensive physio and ot help to get me on my legs. I can wobble a short distance only so very restricted in what I do right now.

Went to see a dr at health centre as it all hit me, my care co-ordinator being off ill for months, no therapy or counselling support for a year and I recognised the signs of how this is hitting me. The dr I saw said to my dh that he is not responsible for me, it is for me to get help myself!! Uh, I rang CMHT, got told no duty worker on so can't speak to one, my care coordinator they don't know when back (not that she does anything just facilitator she says) and can't see anyone else unless psychiatrist says so. Taken 3 weeks to get psychiatrist to talk to manager of cmht - end result I got told was "complicated" and that was all. Got told unless I am sectionable can't have help. What do they want to do, wait until I am suicidal before they do anything? I am going that way but don't want to and the gp dr I saw has seen me once in my life and told me I have been a lot worse when she saw me last year so go home and take diazepam.

The stroke dr I saw on discharge said that stress could make this happen again - it is a neurological, physical problem and I needed help from cmht, so saw a gp to ask for help. She said unless I am sectionable she will do nothing.

Why because I will nto say I want to end life can I not have help. I can hardly walk, had scary scary time in hospital - couldn't even take self to toilet.

Am falling, physically and mentally and I know the signs. Stroke dr said I was very low and concerned about me. She will write to my gp (couldn't get apt to see him -a 4 week wait usually, right now unless phone at 8 for emergency apt and they go so quick have to phone every day) to say I need more help. I didn't mention mental health at all she just noticed I was on an AD. She asked if gp could get access to counselling for me - this lady gp I saw said "what do you expect from me on a Friday?" Well she not doing anything about me. Then my dh goes back to see her in tears as he not coping and gp says I am not his responsibility it is my responsibility to get help!!!

How can I? Can't cope - can talk now, need help doing anything and got no support till see stroke dr in 2 months in outpatients.

Sorry - essay above.

Dear God Keziah , what examples of "positive " attitude does your support worker suggest ? Can s / he pull apart a couple of your supposedly unhelpful statements to really give you more angles on the ways they think you could adjust your thinking ? They have done some CBT tyope work with you at some point , have they ? I do wonder if some of the staff you've seen in the last year have been predjudiced about diagnoses or just that their local work culture tends particularly to the rather harsh & cynical , which isn't unknown in the field (these are the wrong words , & unfair to MH workers , but I'm floundering in my sea of dimness - will try to read up a bit )

Hmm ... does support worker pull you up on mild irony ? ( I'm sure you try to avoid that with them ) or is she concerned by signs of your striving to improve circumstances / aspects of yourself, which she perhaps interprets as lack of self - acceptance or something ? Sorry I'm so amateur , but I'd keep a diary of such "negative" ideas etc - I'm sure you are able to analyse your day to day thinking & see patterns & no doubt you try to do this work with her .

Good that they've finally given you some sessions , but after so many months in such serious need - thanks a bunch , eh. Hope it's the same person each time , as chocattack says , & someone you can work well with.

Agree that it's excellent that you rested earlier - I find every scrap of rest pays off in days after , so I'd venture that you will too. Sorry for hip / quad weakness & hope physio slowly pays off.

I think it's an absolutely momentous achievement for you to be going with the flow & being practical , & as calm as you can , about visiting your Mum . The more you rest, the more cheerful you can appear for her .
How lovely that your dn visited today .
(I'll complain again about your Dad's expectations another time - very glad not so stringent atm ! )

You are very kind ,Keziah & chocattack , & boost my morale during the long minutes of fruitlessly searching for the right word Hope for a peaceful night & don't forget - you are doing INCREDIBLY , superhumanly times ten thousand , well!!!!!!!!!!

Choc - no idea whether it will be the same person, all I know is it is for 6 one hour sessions, that I have to travel to (great when can't drive) and that is it, nothing else allowed. It is agency nurse at the CMHT as no one from the CMHT obviously was prepared to see me.

City -no I have had no cbt, no psychologist (they only give 12 sessions in my county maximum unless you referred for pnd then you get a year's help (I dont have pnd!), no nurse counsellor (the only other option in my county is a nurse trained in psychdynamic counselling, not a trained counsellor as there are none as I have been told), no hospital based treatments, no nothing - as I don't deserve anything.

I got upset tonight, my dh told me off for raising my voice - all I wanted to know was if we had to be at X hospital for Y time, what time did we have to leave tomorrow... he said "do you want to take a picnic or not" - and the next thing I know is he has got into his car and driven off. I tried to talk to him before this and he talked over me - my dh never talks to me normally he is so quiet, yet when I was trying to talk he wouldn't listen, then he sees me upset and leaves me.

How am I mean to drive YZ miles when I can't even use a clutch or gear stick to see my Mum on my own? He would not listen to me.... no one wants me to talk or express emotion, yet when I get depressed and go down so low I get criticised. I cann't cope.

Keziah , you & dh sound so lacking in outside support :-( & although you've been fighting for basic support for many months , I'd suggest you & he seek some personal / home care from your local council , and carers' support services ( if dh is up for it ) when the current crisis with your DM eases. You both need more support & you and dh need a modicum of persomnal space & independence - I have some idea of the pressures.

Can also really relate to this type of falling out over something & nothing whilst you're living in a bubble of health problems and with v little practical support , & even less emotional support ... a disproportionate "snapping" . I hope you did get to sleep in the end.
Please excuse me posting in 2 halves , but I'll post this in case you're up and alone ...you will survive this , but you're under ludicrous stress , so obviously something in your life needs to improve or you'll lose your sense of hope - & how you've fought for it over recent months (it time for ironic emoticon again ) xx

Apologies for typos & mistakes. I still haven't PMed you - had workmen doing home repairs earlier than expected since Thurs , till tomorrow eve , so have been v busy & keep falling asleep in evening ...kept half waking during Doctor Who & trying to get up to say hi on your thread.

The pressure that seems to me to be intolerable is this one of not expressing more stress than your support worker deems acceptable , & IME the weak all over sensation you may have as part of a neurological flareup makes having a sustained serene disposition pretty unrealistic , but it's not all doom - you sound as though you manage other aspects of your life in a very sophisticated way , so you'll soon get the hang of this - and you may well only need to do so for a few more weeks , though with such intense stress in your life , your episode may be extended.

( When things are quieter for you , I'd suggest those close to you , dh most obviously, will need a few bouts of "tuition" on the intensity of the fatigue & how you may need lots of little quiet periods in your day during less well periods to be able to maintain harmonious communication , or , as you become more able to pick up your outside life , to go to bed for a long nap as soon as you get home . I know what a nightmare this sounds but can attest to the fact that this effort to not to reach the level of actual irritability isn't at all about trivial exchanges... this affects your relationships & key life choices , so be patient with yourself /ves ).

Sorry for so much emphasis on physical triggers for emotional reponses , when its your MH that's under the most strain . The services on offer for your level of need are deeply inadequate , from the very helpful amount of detail to help us see what position you're currently in . There was a lot more help available 15 -20 years ago IME.

I wish I could help you find some actual help , a feeling of structure , for great want of a better word , if that's too much to be expected from the MH nurse sessions you've finally won. . My experience has been that it's when others show a bit of humanity & warmth that I've felt comforted ( fount of wisdom , aren't I ), & my guess is you do need some solace - sorry if I'm completely wrong & you're largely on autopilot atm, dealing with your DM's condition & trying to make your physical recovery. I know you enjoyed visiting your friend the other day , & it would be so good if in time you could spend more time in good company . In the meantime , you could - this is an odd idea - look at internet sites relating to a particular interest where you'd like to see progress , & keep informed on how others with your interest are trying to improve things - eg I like social sciences & am cheered up by reading a "radical psychology" site.

Hope your dh feels better today & that you can feel better towards him - don't expect too much of yourself here , you felt vulnerable on several , deep levels when he drove off . It also reinforced your worry that you're not doing well enough - you so , so , so are xxx

city thank you. Dh came back in early hours and spent day driving etc. DM sent home - despite being on oxygen until Sat. I am happy if it is the right thing, but I really don't know.

Not really able to take much in now - will try and read your thougtful posts tomorrow. In pj's now!! But wanted to try and send a better post. Feel so awful for what dh giong through because of me.

Went to see an osteopath yesterday, as shoulder pain (from a car accidnet I was passenger in last year), that has really helped.

Incredibly sorry not to have replied , Keziah - have slept endlessly since yesterday afternoon as did so much ( hope I'm not making you feel worse about neuro conditions- it's a nice sensation[grin). Asked dh to check your thread but fell asleep as he read it to me ... 9 sorry, he doesn't read thread usually).
Sorry you have this worry for your DM - perhaps you could get knowledgeable opinions on this from people with experience on the Health board I know you know your stuff with hospitals ...may be perfectly good , standard care , but after the lower care ward initially ,pressure sores etc , you have reason to be wary . I would think your DM feels much better emotionally at home , good for healing pocess etc , but you want her close to help in case she needs it ...sorry for brain going much slower than yours .

I really feel for you about your sense of guilt over the strain on dh . Dh had been through so much with me over the years ,& I thought nothing could strain our relationship , but I repeatedly yelled at him to leave over the 1st year or more of neuro condition . I was certain I would ruin his life - was truly unbearable to rain down impossible practicalities & emotions on such a good man . Happy to chat about relationship stress stuff anytime , & would say , it can be done - very happy now....if your physical condition hangs around a while , you'd benefit from meeting others in similar position.

Thank you so much for posting when you were exhausted- feel so awful about it . Certainly you shouldn't worry about writing a " better" post - it's quite tiring posting at all.
Very glad your session of osteopathy helped . Shoulder pain is nauseating.
Hope your DM is getting on OK at home , and that you've had extra rest after exhausting day & great stress. You did well to get to hospital xx

Hi Keziah,
Just sending you warm wishes in case you are in position to see this. Hope the weekend worked out ok (as well as it can) with your mum leaving the hospital and that it was the right course of action for all involved. Hope this week is calmer for you.

Hi Keziah, adding my good wishes to chocattack's and hoping you've been able to have a calm day , & particularly that your Mum is getting on OK .
If there are still really adverse events happening , please don't be shy of letting us know if there's anything we might do to try to help .

Hope you get to see osteopath again soon , & that your physio exercises aren't too uncomfortable.

Sending positive thoughts & sorry for depressing subject matter in yesterday's post . Hope stresses ease soon so you can look forward with loads of hope , as I know you always try so hard to xx

Hi Choc am very worried about my mum, she is now awaiting respiratory consultant apt and has 2 inhalers that she doesn't know how to use and due to her stroke can't physically use and a 3 day wait for a gp appointment.

today is a bad day, wound up myself, can't relax. Got to meet this agency nurse from my cmht who has been told to give me 6 hours (no more, no less!) - don't want to see an agency person I will never see again, I don't open up like that, in fact that is why crisis team would never see me as they say I don't cope with different people. But I have to go and I just want to hide in my bed and sleep till tomorrow. I know I asked for help, but.....

It's no surprise you couldn't relax today, Keziah. From your post it sounds like you were particularly anxious about meeting the agency nurse today for the first time. That's understandable and I can certainly relate to that. I imagine a whole heap more things relating to your (lack of) mental health care came rushing through your head (in addition to the bit you touched on about not opening up). You're being very brave to even put yourself in that position and I know you've asked for help but sometimes it's difficult to accept the help. Especially if you might be thinking that actually they might not be able to help you much (because of the 6 hours, no more, no less criteria etc). Hopefully, by the time you read this you will have already had your first session and it won't be nearly as bad as you thought it was going to be. As you say 6 sessions isn't long (I recently had 6 sessions with a counsellor through work and from the word go I was panicked about only having 6 sessions) and you'll need to work out how best to gain benefit for you, well as best as you can given the circumstances. Even if you aren't able to 'open up' do you think you could use the sessions to help you? I really hope you can. Maybe even if it's just to give you and your dh a little break from having to deal with everything yourselves.

It's only natural that you're worried about your mum. I just re-read your thread and I hadn't realised that she was poorly already. You seem to be some distance away geographically too (you mention of a couple of hours or was that just to the hospital?) so that must add to the worry that you are so far away. Is there someone living with her / nearby to help with her inhalers? Am I right in thinking that it's your worry that is making you feel the way you do and not because she has taken a turn for the worse? I'm hoping that it's the former but that you might be able to worry less (easy to say I know ).

Choc - yes 2hrs and a bit to my parents, 90mins to the hospital she was in. She did take a turn for the worse last week with the heart attack but no medical person can explain why she has inhalers apart from the lovely F1 dr I saw who prescribed nebulisers for her, but that was due to low oxygen levels. Think am just glad she is home, although she has mrsa now.

Agency nurse was ok, but there were 2 others in the meeting, one lady who saw me 4 weeks or so ago (a social worker in the CMHT) who said I couldn't see her again, not that I asked to see her either (it was to facilitate the fact that they would not let me see a duty worker!!!) who sat there writing notes. Think can use the agency nurse to help with current stresses of illness, as that is quite specific to now - but why they are letting me see her 6 times (no more, no less - you know the drill) when I have missed 6 hours of my useless social worker care co-ordinator I have no idea (this SW says I am here to facilitate not to get to know you or listen to you and if you get upset I have it written into your care plan to terminate the session - oh yes it does say that!!!!!)

Grrrrrr-- going to try a whole day at work tomorrow, dreading it as last Wed when I tried I ended up sobbing in the shower as put shower gel on my head and had no energy to get it off. So already had a shower, with my garden chair on shower tray with a towel to stop slippage - so can't wash hair tomorrow!

Sorry you got the 6 hours only Choc - hope it helped and good that your work at least offered something I guess.

Sorry such a worry about your Mum's care, Keziah . Very inadequate to have only a GP appointment in 3 days to find out a bit more - could someone ask the ward desk of the ward your DM was on to look at her notes ? ( sure you've thought of that ) . I would be annoyed at lack of explanation as to why inhalers prescribed / respiratory consultant appt made . Hope mrsa under control . Hope dM is in reasonable spirits at home .

You must have been taken aback to see that SW today - would have shaken my composure - you ought to be pleased with yourself for going ( However much you need the help , in present stressful circs it must have been difficult - opening up to stranger v hard as you said ).

You are amazing to try work tomorrow , especially a full day . I hear you on practicalities of hairwashing etc , & sorry you can't do it again tomorrow to feel better.
Very best wishes

Hi Keziah, how was today? You were going to try a whole day at work . Whether you did or not hope the day was ok. I'm guessing you probably find the distraction and company helpful.

The whole situation you described with your appointment sounds nuts! I'd be really pissed off annoyed if I'd gone and been confronted with 2 extra people . I mean why? (I know you explained but in all honesty I'd be right behind you if you thought their excuse explanation just wasn't good enough. It isn't). Was your DH there with you for support? Think you did incredibly well. I just don't understand why they put you under so much pressure not to get upset.

Hope your mum is bearing up - not long to go until her GP appt. Maybe then you'll all have some more answers.

Hi - I guess I wanted to do a whole day at work to push myself. I have learnt that some classes took advantage!!! So ended up a bit stressed. Physically had an assistant all afternoon to do all what I couldn't but am so glad I am not in this am!! Also the next 2 weeks are critical times at work so need to be in to reduce stress for results etc.

Choc - yes, distraction good. And no, Dh not there- but that was ok, he either says nothing or gets frustrated and critical!! He is my taxi driver, then sits in car and works trying to do his hours!! I have decided that the 2 SW's in the team are going towards retirement in 5yrs or so and can't be bothered with people (well that is what am telling myself to keep me calm!) I was very stressed with it though.

Well had physio this am. She said I am responding well, has given me balancing exercises and a stick to use at home instead of the crutch, but crutch out of home. Walking is really improving but my left foot will not do the exercises set, so now have to use a band to get it moving. Had to do some exercises on floor/bed not chair as left leg not respond when on chair and felt stupidly happy that the leg began to respond when sat on floor!!!!

Hi Keziah , so pleased you achieved your day at work & am gawping at your focus on the important time coming up.

Your analysis of the SWs' attitude sounds right to me but you should be kept informed / asked about such observation / involvement .

Hope your Mum is getting some more information , and getting on as well as possible,

The improvement in your walking sounds incredibly positive , as does your left leg responding when you sat on floor - that's quicker than I've ever experienced, & I have lots of irritatingly cheery tales of recovery .

Hope your sleep has been a bit better recently to help you with critical time at work .

Well it's Friday and here's hoping you made it to the end of the week intact, Keziah. It sounds like you don't work weekends, so hopefully the next couple days will be less stressful than the week gone.

It's great you're responding well to the physio (I don't have any experience with this side of things so I'm relieved that city does!). I imagine the improvements how ever small must be really encouraging. Give yourself a treat and keep up the good work .

Hi Choc no I work 4 days a week, so weekends off which is needed right now with caring for Mum etc. Awaiting breathing tests overnight for Mum right now.

Well Dh had phonecall from my supposed SW care co-ordinator who has been off ill since beg of this year, she is back on phased return and said she would see me so not get the 6 sessions of counselling from the agency cpn.... grrrr..... thankfully my dh was assertive (rare!) and told her that as she was on phased return we had no confidence she wouldn't go off ill again, which would put me back to where I was in Feb. She had no idea of what had happened to me, how CMHt refused even duty worker phonecall twice etc.... He recommended she focussed on getting caught up on all her cases, doing her care co-ordinating role, as the meeting I have been waiting to be organised still not done (~he told her what to do, who to speak to!!!) that is her job and that as she told me I couldn't talk about life, emotions etc seeing her was no use to me right now!!! So next Fri I get to see the agency CPN for session 1, unless the CMHT manager overrules.

Work was bit too much, see GP on Monday for my fit note to be renewed. Am going to ask for 2 full days, 2 half days each week. Unnecessary bits of my job (standing for 25 mins saying don't go up the stairs) my line manager signed me off till end of July to make doing the main bit of my job easier. So work supportive after my meeting on Friday.

Not made much progress physically this week, feel like it is going backwards to be honest. Is that normal city?

How you doing Choc? xx

Ok - had bad morning, been crying etc. Dh had to take half a day off work, that he somehow needs to make up time for this week.

Sorry such a hard morning , Keziah. Very stressful for you when you have no option but to have dh take that time off but you are doing so amazingly well given the circumstances and severe depression you've been dealing with .

Occurs to me that you may have had a reaction to the SW coming back & saying you were having the measly agency nurse sessions taken from you . Your dh's reponse to that is so satisfying - how on earth did he maintain such presence of mind .

That feeling of going backwards physically sounds more than normal , it's what I expect, and my energy levels do balance out . I don't think your consultant will say you should be unduly concerned by it . I find my body is fairly predictable in its response to differing levels of effort nowadays, which I find very helpful - it's not as puzzling as it was at first.

Hope you feel less grim this evening , and it seems very sensible to get your fit note reviewed - you've been "operating " , physically & mentally, at a far higher level / rate than I'd have expected so few weeks after leaving hospital . ( I'd also guess that your employer & even GP probably have little idea of the intensity of the fatigue you can experience with neuro conditions , so point them to some sources of info ). Hope you get a decent sleep .

Hi Keziah, how are you now? Sorry I missed your post. Actually I'm not sure where I've been the past couple days. Today has been good for me though, sorry it hasn't been for you. But you have been doing so much recently. It's definitely sensible to have your fit note reviewed. I'm still in awe that you can do what you do [she says trying not to feel a light-weight for managing only 3 days!].

Well done to your dh regarding the SW situation. That couldn't have been easy for him or you. Hope you're feeling less worse. See how you feel tomorrow. Take care.

wrote a really long reply, it has disappeared!
Am exhausted... Choc don't think what I am doing is good, knowing me it is my usual push myself till my body collapses, or my mind as it is all I know how to cope, I can't cope not working. Work is my only refuge in my head, even though work can be hard etc. I don't do housework, cook, shop or have a social life and the ivf failed, so no children. You are doing well, balanced life is better than what I do.

City am so exhausted. Gp said come back in 3 months. Still awaiting an OT referral for physical aids needed etc. Have garden chair in shower and on top of a towel, my dh has to do my hair etc. Hard not being independent. Tried to help with dinner last night - dropped the pepper, cheese everywhere and my sleeve ended up with tomato all over it. Dh told me to "go away".

It's frustrating when long replies disappear. Thought it was just me that did that (I am a relative novice). My life isn't balanced - different to yours but by no means better balanced . Sorry the ivf failed, know must be devastating when you want children [sends hug]. I work and am a single mum - that's my life. Actually I don't have the energy for much else!

Another rough day, Keziah? Are you able to rest? Everything is always so much worse when we're exhausted. Hope you're able to get some sleep tonight. x

Hi Keziah - so sorry I haven't replied , was out all day , fell asleep on sofa then overslept...you two sound so much more organised .

The incident with you helping with dinner - your dh 's unthinking comment must be in the manual of what not to say to a person with physical hurdles . I felt very stressed , reading that - can definitely relate . You need to be able to talk to ohers in a similar position , even if only on the net , though with work , physio & the extra time it takes to do everyday things atm , it won't be easy.

Have you no appointment coming up with neurologist / stroke consultant / neuro nurse ? There's a lot of symptoms at once to be dealing with , so perhaps you culd face reading one of the websites for neuro conditions ...I find the MS Society's medical advice pages very useful , so perhaps you will too , eg on fatigue - hope you don't mind me suggesting that site , the symptoms & advice are the same for the person having a one off bout of neurological problems.

Would suggest that the best thing you can atm , to give yourself the chance of gradually improving , ( apart from trying to keep your morale up by working ) is to allow yourself lots of sleep - it feels like distancing yourself from normal life , having naps , but it's the way a lot of people manage. ( sorry , that sounds bad - am in mad rush ) Once you get to know your body's needs , the naps tend not to be disruptive - you can fit extra sleep into your day , & hopefully it's only for a month or two...it's by far the most important thing , IME , that will help your body "heal" itself

Good luck with work at v hectic time , hope you get on OK

are doing far better than me lI& AS SOON AS GOT IN YESTERDAY SO

oops , sorry

Stroke consultant July!
See fertility consultant at end of this week to see why ivf failed (well icsi, but hey...) and dh forgot to ask for my gp blood test results today so I got really upset with him. I am 36 so feel time is running out - he just forgets things that are not important to him. Yes he wants kids, but he is not the one running out of eggs - although it is male factors that took us to ivf no doubt it will be me getting too old, or us running out of money that will stop it, sigh....

time off tomorrow - aim is to have enough energy to do all my physio. Looking at my work next year was suggested 2 full days and 2 half days - no, no, no.. half days don't work as permanent structure as have to travel on 4 days which takes time. At present am on a medical note, so am not doing all of my 3 and a half days but at least am in part of the time when many wouldn't. So got stressed about that.

Am tired, grumpy, fed up generally and trying not to shout at dh!!

Choc - gosh single mum and working that sounds hard - how old is your dc? x