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.

So sorry to be late back yet again, Keziah , & hope your day has left you feeling , as chocattack said before , less worse .

That makes little sense to me , your only neuro - related appt not being till July , & no hospital clinic appts apart from the pathetic amount of physio you ' ve received , long with lack of OT help . I ' m sure you've been wondering whether to contact stroke consultant's office to ask for a quicker appt , though of course that would depend on the aspects of your condition & progress you need to discuss . Perhaps you could have acess thrrough stroke consultant's clinic to one of the nurses specialising in neuro conditions ?

Your workplace don't seem to be grasping the practical difficulties you face - just what you need :-( . I expect you've already had to request a new assessment by your institution's occupational health person or whatever they're called to assess your requirements to be able to perform your job ? It must be so hard to keep your composure whilst negotiating this - you are doing so well - but I "hear you" on the trying to keep temper with DH etc.

Don't want to further depress you , but IME the neuro condition causes me to feeling v trembly - not so much visibly so - more jelly like - & weak & short tempered . which is why I'm so impressed with your determined approach to work & family , but worried also that your work & even dh probably aren't very aware on this issue yet .

Please do make sure your work factor into next year's arrangements , the fatigue of the current condition, which will hopefully have left you by then , but may linger a little longer .

Really feel for you about your dh's forgetting to ask for your results . Perhaps he's like me when under stress & forgets the very most important thing to him... sorry it's such a sensitive subject , & can certainly relate to the sense of time running out & the woman being somehow more responsible .
Feel angry for you & dh not having more support from services during this series of great difficulties , & greatly admire your determination .

city - yes a temper has never been something I have really struggled with but now I feel short tempered so much. Hadn't linked it to this physical problem, as usually I withdraw and curl up etc.

Saw fertility clinic today about failed ivf... they said I couldn't cycle again without them writing to my gp cos of this physical admission to hospital . I smiled and said "well my gp did not sign me off work, just for restricted duties and when I saw gp this week he said come back in 3 months" - so he is not concerned, although knowing gp will pass the buck to the consultant I see in July. All welfare of the child apparently. Yet if I had children no one would have done anything - no quicker OT or physio etc. Also I do have a husband, and some people are single parents - but no, another block to having children. I am 36, so consultant said I was young - er, no my lack of eggs tells you that I am not!!!!! As we have had our one NHS cycle I will not be seeing her again... this review was free hence we went.

City please do not feel you have to apologise for being late to reply, it is very kind of you and Choc to support me right now - it is really helping.

Am shattered, want to curl up and cry, but no tears forthcoming.

At the risk of sounding like a stuck record, Keziah I am just utterly amazed at your ability to cope (I realise it probably doesn't feel that way to you and I don't say it to imply otherwise... sorry I hope you get what I'm trying to say). You have so much in different aspects of your life all 'punching' (for want of a better expression) at once and that's enough to overwhelm anybody. I imagine it's difficult to see a way forward yet at the same time you're trying to remain as positive as you can because deep down inside you know that doing so is so important. It feels like a lot of fighting and that saps energy, even without the neuro condition. When I'm shattered and want to curl up and cry I tell myself it's ok to do that and refuse to feel guilty (not saying you are though ). Wish I could say something more useful...

No, very useful Choc. I think my biggest fear is of stopping - I did that once many many years ago and stopped for months. I do have self pity days, but life just keeps getting worse right now so my threshold must be higher.

Got agency nurse cpn tomorrow - first session. 5 left, if allowed them still.

Thanks for kind words about my very late replies , Keziah . ( & here I am , late again after a sleep marathon ). So sorry to see you feeling so low but as chocattack says , your determination & endurance are absolutely incredible .

The fertility review was always likely to give you a battering emotionally but the way the referral on the child welfare checks are applied seem indefensible to me - unjustifiably discriminatory , & cynical in paying lip service to the welfare objective , avoiding real issues of risk . It's probably because the awful truth is that the State can't even begin to truly safeguard children , even with exhaustive checks ...with superficial discrimination like this , problems aren't really avoided . It's as though those drawing up the guidelines have chosen a statistically low risk group to potentially refuse access to the treatment , to pander to Daily Mail readers , while more statistically significant so called predictors aren't checked . , < and breathe > sorry to sound so arrogant

Sorry you only got one cycle of treatment on the NHS in your area , so have fingers firmly crossed that further treatment is possible . I know how overwrought I felt when we wanted children & thought it wouldn't happen ( it didn't , but things have worked out fine ) ...I don't know how I'd have dealt with finding the sort obstacles in our way that you & dh have faced , & I hope you're being a bit kinder to yourself than all this constant effort sounds - as chocattack says , it must be exhausting , & your answer makes sense but is very poignant & we hope you'll find a way of easing up on yourself when the time is right . You need better support than you can access atm , & you & dh have fought so hard for any support at all.

Talking of which , hope today's session with agency nurse went OK , & that you'll still have the 4 other sessions . Very bad for your mental & physical health to not have a consistent nurse , & a steady source of support would make such a difference to you.

About the temper thing - for me , the irritablity & feelings of emotional exhaustion , & a degree of vulnerability & jumpiness , are direct physical symptoms of the neuro condition ( I've had it many years , so am sure about my own experience of it ) - it's absolutely not caused by the stress of physical limitations , flareups, etc . You really deserve info & support from the hospital clinic on this . I know how hard the feelings can be on all relationships , but am certain your high intelligence & resourceful approach to other big challenges will lead you to find coping techniques while the problem persists - it may very well ease off suddenly , as I find neuro things do , though for me it's allied to feeling more tired & jelly - like , the way one feels when getting over flu .

Your loved ones will also need to learn to deal with the difficulty while you have it - I know it's adding more to an extremely heavy load , but it would actually be beneficial if your dh could concentrate on the emotional symptoms & the impact of your situation where possible , even more than the physical ones , but if you don't feel it's a good idea to apply for a temporary helper in the home , it's very hard to manage all the challenges at once .
Here's hoping life circumstances improve , your physical condition gradually gets better , & you find workers who become allies in your herculanean efforts to help yourself .

So sorry for these months & months of adverse events , & hope you can find places of safety (or whatever it is in counsellor speak ) , to rest / express yourself whilst circumstances continue to demand enormous effort & endurance .

Yes, your threshold is very high indeed! I hope the agency nurse session today didn't throw up any nasty surprises. I've got all body parts crossed whilst wishing for a little more support for you right now, Keziah.

Social worker care co-ordinator who just "facilitates appointments" as she tells me whenever she is not off (just had 3 months off) rang me Fri am to say she would see me (to facilitate what I have no idea, rather than number 1 of 6 talking sessions with agency cpn!) and my dh and I said "no I want to see what was arranged" - turn up, guess what? SW sat in with me on my first session and spent all the time talking politics and arguing why I can't have the resource.

So my one hour of one person ended up being 90mins of 2 people (this from a team who say they are so short staffed I had nothing for 3 months, at a time of real struggle for me) arguing why I can't have anything. !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! (better than what I want to say those !!!'s) I cried lots afterwards and took it all out on dh at night shouting at him.

Not good.

City - you summed up the fertility review very well. I can't believe they need to write to my gp just cos I had some time in hospital due to a physical problem. I know full well that disabled people - whether in wheelchairs of blind etc (at extreme end of disability) don't have their children taken from them, even if no partner around, but that is basically what they are trying to say to me!!! In theory we could pay nursery fees all the time my dh is at work and he be in charge when not at work (which is what single mums have to do etc I am sure when at work) - but oh no it is a case of "you can't have ivf because...." have no energy to fight this legally, and I am 36 so time not on my side. Going to work on physical recovery right now and try and get my bmi a bit lower (it is not too high but would like it nearer 27 than it is!!).

choc kind words. However where I live it is a case of how many hours nhs people can waste saying "no!"

Hi Keziah , am aghast at the SW & the politics in your area . I suppose it's best for you not to say too much on the net but how on earth can this not be reported / complained about in some way - & yet it seems reasonable to feel you 've recently been denied services because of your previous comlaint being upheld , so are unlikely to feel up to challenging them more than you both already, very calmly , do.

The shouting at your dh is so undrstandable , but the last thing you wanted - I feel awful that you're both suffering like this .

I wish you could get decent advice & support on this though I see you know your stuff , & know that you can't just phone a helpline . I'm sure MIND or similar's legal dept would take an interest & try to accomodate your need . Sorry to repeat myself , as I'm sure the question of what to do is uppermost in your mind.

I do agree that the fertility treatment welfare guidelines essentially make no sense & cause great injustice . IMO disability rights is the civil rights struggle which is least understood by society at large, although we're all affected in some way .

Good idea to focus on your physical recovery & BMI , which is of course less easy to control when less active . Do I remember rightly you once said you found exercise helped you greatly with difficult emotions - I really feel for you if you're missing that.

So, so sorry not to have any advice - sending positive thoughts if you don't mind them - hoping for good news & straightforward , non - political support to help you recover - including from the trauma of trying to access basic services .

Hope today was better & that you get a decent sleep x

Dh contacting Mind advocacy again - sadly the one who helped us last time moved jobs. Not to complain,just for advice at this stage really. Complaining means they do as little as possible to help and as much as possible to cause problems. If I could claim legal aid I would seriously take this to court though - but the thought of losing our home and every penny we have is nto something I can cope with stress wise... isn't it ironic, if on benefits I could complain and probably end up with a large payout, as complaint firstly was upheld in several parts - only result was a "sorry" verbally from the person doing the complaint. In fact I am sure the stress from complaint has made me more ill than anything else.

i have taken to comfort eating - so not good with a bmi of 30 now ... trying to stop that is hard.

Positive thoughts city most welcome. Just being able to splurge here is cathartic (and you are right am not posting the worst bits!)

Night night xx

Utterly . Defies belief. On all counts really. City has summed up nicely and while I notice that your dh contacting Mind again, would you reconsider contacting your MP? I know you'd said before you didn't want it to get political but you really are being treated badly. I have personal experience of contacting my MP (albeit not related to my mental health) who was able to resolve my issues with a gov dept (I won't name which one here) within a couple of weeks and that was following 3 months of me fighting them single-handedly to no avail. I realise your situation is very different and more complex and therefore you wouldn't necessarily get an instant fix but you must be wondering what is there left to try. Whilst you're at it you may like to bring up the fertility issue - I'm no expert but aren't they discriminating against you on the grounds of your disability? Is that even legal? I know a couple, one of whom is severely disabled, who investigated adoption and who were (quite rightly) able to be considered as adoptive parents. Why is this any different to ivf? As you say, all it means is a reliance on outside help (they have a carer anyway) such as nursery, nanny/child minder, friends/family etc. Sorry don't mean to rant.

Hi Keziah -thanks for explaining about results of complaints , you & dh have dealt with the mh & other systems so expertly & I'm just wodering what on earth you can do now .chocattack has better experience & advice than I have ( have fallen apart in past before managing to make complaint so am full of admiration for you ).

I 'm so sorry about the unfairness of the situation when you don't qualify for legal aid & will think on it some more , but agree you may well find the MP route the main avenue - I can see you may feel it's not suitable ..

I think the discrimination in the welfare of the child checks is standard , chocattack but will recheck that too.

Massive sympathy re : comfort eating , Keziah ...one of the very first symptoms of my neuro condition was a raging hunger , which I consulted a mh professional about , thinking it was psychological - what did he do - he bleedin' laughed at me ! and that was the extent of his help ! ( sorry , think he was nervous of "female" problems )
Hopefully you aren't suffering from that sensation of hunger , but be aware it may not be simply comfort eating , so you can adjust your diet as needed .. in my very unscientific experience , neuro condition is linked with both weight gain over some periods of time , & being extremely underweight( despite over eating ) , at others - much more so than normal female fluctuations - so you might want to keep a diary of food & weight lined to symptoms at the time , to clarify causes of the gain .

Hope you're sleeping peacfully by now - difficult in the circumstances.

city - yes, am ravenous. ... ahhh...

will post more later but have several hours of work to do at home tonight now which I don't fancy! Bless you both xxx

Keziah, just in case I miss you later hope you doing ok.

Thanks, City. You can tell I'm not familiar with 'welfare of the child checks'! I just don't understand it [shrugs].

Glad you're managing to work , Keziah , however much of a trudge it is - very hard to have to do several hours in one go , so I expect you'll be too tired to post again tonight.

Ravenous ? Sorry to hear it but knowledge is power - why on earth haven't you been assigned a specialist nurse by the hospital clinic , even though it is hopefully a one off attack ?

You don't sound at all as if you don't know anything about welfare of the child checks , choc - I need to do some checking , and am inexperienced as well as amateur . Very selfish of me but I was oddly comforted by your shock at the discrimination , from my POV as someone with disabilities - it is outrageous and such an insult & stress on Keziah

Hope you've survived the piles of work , Keziah x

City yes I'm very shocked. There's more to parenting than being able to walk etc. And anyone can become disabled at any time so then what? I just feel of all the things going on for Keziah, she shouldn't be having to stress about this.

Sorry Keziah don't mean to talk over you . Hope you survived the workathon x

Hi Keziah and choc - was me talking to you over Keziah , choc, sorry all . So agree with you on the misery of the extra stress & hope Keziah won't be adversely affected by it , but that's sadly unlikely.

Hope today hasn't brought any nasty surprises , Keziah , rather than positive developments . I can think of a couple of ongoing situations which might generate stressful feedback for you , but won't mention them at bedtime . We're sending lots of positive thoughts your way x

Hi city and choc- have just been so so tired this week. Physio was helpful yesterday, more exercises and importantly told to "invest time in physio" - ie to do my exercises, rather than working so leg etc too tired to respond". Off work on hol now for just over a week, so hope that helps.

Saw the agency cpn today - just talked and talked, she now knows more about me from that hour than my sw care co-ordinator and importantly I had it, I didn't get it taken from me. 5 sessions left.

Yes, discrimination is rife if you need ivf due to infertility issues - if have a mental health issue or a physical obvious problem. Have no energy for fighting right now with it.

How are you both?

Keziah, I'm so relieved the agency cpn didn't get taken from you - and glad that you managed to talk and talk. Hope you feel a little less 'heavy' having shared. Hopefully your week off should give you more time to invest in the physio (as well as some fun things too!).

I hear you with the 'no energy to fight'. I know that feeling well. Living it this week. Fingers crossed next week brings a little more energy for us both. Hope you've had a good weekend. You too city.

Keziah, just wanted to say that the other option for you if you feel that you are still recieving poor care that falls short of your care plan is to talk to your local MP - seriously. Sometimes they can be very helpful.
Best wishes.

Hi Keziah and choc . So , so sorry not to have said " hi " on Friday but I keep falling asleep as I' ve done a bit too much recently . You'd think it only takes a couple of minutes to post , wouldn't you , but I doze off blissfully as I attempt it ...

So sorry you've been so tired . Great to have a week off , & I hope you do get a bit more energy to help you with your physio - very good to have extra guidance & new exercises .

Been a bit worried about asking this lately , but has your DM been getting on relatively OK this last week or two - is she able to be at home ? Obviously don't answer if too stressful .

Brilliant news that you still have the agency nurse sessions , & that you were able to really talk to her , so I hope that continues .

Sorry to hear it's been such a hard week , choc - sending positive thoughts if I may ?

Am well , thank you , & had great fun doing a local "uk uncut" protest against the banks being bailed out by taxpayers whilst nhs services are privatised. One bank tried to drown out what we were saying with loud '50s rock'n'roll

Selks thanks... am going to see a Mind advocate this week. What I have learnt from complaining is that I have received worse treatment - proving it is the hard thing though even though I know it to be true. Result of an assessment done is that I can't have any "help" from CMHT now until I have a better relationship with them - love the way the emphasis is on me improving the relationship... what am I meant to do when cpn number one is off work ill for 5 months, then when she is back gets rid of me, nothing from cmht for 26 weeks until complaint by me upheld. Now got a useless SW, who been off work for 13 weeks and on phased return, last time I saw her she walked out of my meeting as she was in tears!! What joy!!

city - you rebel!!

Spending time with Mum this week - she is better than she was, awating 2 days of respiratory tests so will know more then, they are thinking COPD.

PS - should have said, hard to have a relationsip with a "team" when they are not there!!

Hi Keziah, pleased to hear your mum has improved. I didn't like to ask either so was relieved when City did .

City positive thoughts gratefully received thank you. Btw I love the sound of the protest. I sometimes feel I should get stuck in more like that then maybe I would feel a bit more 'alive' iykwim.

Hi - I do fear the improvement is not permanent though - she is in a wheelchair, not able to self care - so guess she not that great right now, but not in hospital and is breathing! Just fear another attack will be too much, her renal function is worsening all the time.

Great am, then got totally thrown by my good friend telling me she is increasing her work hours, got 2 pre-schoolers, getting a cleaner, got new car, going on hol = none of which I have and felt jealous. Then feel guilty, then feel guilty as not giving husband anything - no career from me to have nice things, no career to take over so I can cope being childless, no children to have joy with, to care for and like everyone else seems to have around me... no ability to do things around house easily - so guess what dh spent his bank hol doing. Jealousy not help, but I am so so so jealous of everyone pregnant or moaning about their kids right now.

You poor thing though fwiw I think it's understandable you feel this way. Yes you must be relieved that your mum is not worse to the extent that she is back in hospital but it's still a worry. I worry about mine and she's not even ill - just getting on. You don't come across as a jealous person so I can only assume that you're being particularly hard on yourself today. The jealousy will pass. You've been ground down and now you're looking outside your own life and seeing what you haven't got. I'm guilty of that too. It's hard but I try to concentrate on what I have got. But don't feel guilty - I know it's a cliche but I'm sure your DH loves you for you. And things won't always be the way they are now. Hope this evening is ok x