snowmash's cybergarden - spring edition

[madmouse]

hello

Good night everyone. Thanks shodatin , I'm very trying! ;)

Very peaceful night to you , shodatin & upward* . Agree that you're not on the way into hospital , upward , & you've done amazingly well to deal with the stresses of adjustment & coming to terms , plus somesymptoms then dosage increase - you are truly , truly brave < ahem , sorry >

So , so pleased to hear that , shodatin , & sorry you're having extra pain . Glad anti -bs are available . Have a very good sleep .

Had evening medical appt and it went better than expected , but I came across far less confident than I'd hoped . Still , am thrilled to have managed what I did . < ungrammatical >T hank you so much for your support - rest definitely coming uo !

Morning all, and hope you slept well. So pleased about your medical appointment hob, isn't it great when they go well? Perhaps not appearing too confident will be a good thing, particularly if you should need help later?
Am glad you managed it - another little hurdle over.

upward, I hope you had an undisturbed sleep and enjoyed the beginning of the new day.

Lovely and sunny here, and am up earlier than usual, having been warned that today is Digital Day for my 3 tvs and it would start from 8a.m. It started at about 8.03 - man now disappeared to consult with shop as nothing received on any tv... not a good start and my temperature doesn.t like it, so I wonder if it's safe to go back to bed? Might don sunglasses and potter in garden until news of a new aerial arrives.

Hope others do better than me with their changeovers.

Wow shodatin , you are very conscientious to have kept your appt with TV person . Sorry it didn't work first time . So annoying when you don't know if he's coming back - did you dare go back to bed ? Hmm , still got a temperature - is that normal for you with an infection of this sort ? Perhaps you'll review the option of anti - b's ? I'm sure you prefer to avoid further drugs where possible .< beaky & bossy >

Ouch at the light sensitivity . No bright light here to make you suffer- cold & drizzly . Crops doing quite well in it , though runner beans have been mercilessly munched by the Slugs of Doom .

Hope you're feeling OK this morning upward , & have fewer chores to do than yesterday . How are you feeling re : the side effects - any less wiped out ? Would be lovely to hear you've felt up to doing a bit of your jigsaw .

Thank you shodatin , & you're right that in the ( rather complicated ) circumstances it's better that I wasn't able to hide my feeling of vulnerability . I took 4 years to work up to this appt , after previous experiences ... felt very embarrassed about that . Onward and upward indeed

Hope we all have a day of leisure & the odd indulgence , if available .

Well...day hospital is just like being on a ward (and run that way). Some educational groups, one to one time each day if needed, and creative activities. I'm only doing a few afternoons, but they emphasised that part of their role is to monitor mood closely, and to make sure I ring if I can't go else they'll call me.

I'm really glad that you made your appointment, hob ! shodatin , I really hope that your digital sorts. It sounds like it could be a nightmare.

Oh no, upward . Some of the practices implemented by mh services could almost have been designed to elicit stress . With luck they'll be implemented by staff of awareness & sensitivity , though I'm sorry you have some reservations about the way day hospital is
x run . Hope it turns out not to put you under further stress after all , & that you enjoy some of the activities . Opportunity of one - to - one time sounds positive .

Fingers crossed for the switchover , shodatin , & that you haven't had to stay awake to no avail. Temperature still raised ? < stored clucks from TIANC > Hope you're managing a bit of food .

Hope TIANC is having a nice change of scene , & that madmouse ,kizzie & butterpie are getting on well .

Pottering about here snoozily , pleased that dh is managing a bit of quiet time off .

I don't know, I'm not feeling great and not feeling great about not feeling great. Loads of queries around safety and insight from lots of people, and staying on the meds is not feeling great either.

I feel awful for you upward , having so much to try & assimilate but not being supported holistically < mangles language > . I guess all these well- meaning concerned professionals aren't fully aware of the effect they're collectively having on you . Surely when they next look at your case in a team meeting , they'll realise you've had a huge amount of change in a few short weeks & are now being intolerably pressurised ? < totally naive > All this on top of the post -discharge monitoring of mood & having your life pretty much scrutinised ? That alone would make me ill ( & I'm certain I would never have coped in a ward ).

Sorry no useful advice , just want to say how well & articulate you sound . Sorry your sense of full insight is being re - examined , but it does not necessarily mean you're becoming unwell again . All the pressures you're having to manage are huge stressors on your mh & you seem to be doing amazingly well . And you could hardly be more compliant ( awful word ).

I 'd hate , hate hate taking the drugs but I think in your position I'd expect to need them for a few months , gradually tailing them off - apologies if they're still causing serious side effects & the prospect fills you with horror

I just had a hideous flashback to a night when you wrote something about hurting yourself trying to get out , or worse.There were several times we thought you were goiing to harm yourself irreversibly in there , & I'm so sorry the current treatment isn't supporting you with the huge tasks of the present & your fears for the next months . I wonder if others on the MH board can advise on trying to get your team to see the picture a little more clearly .

As much as I whinge about it, I do need to try and remind myself that they are only keeping an eye because they feel they should...and I can't assess that objectively because I don't remember when I was 'very unwell' .

I think you'd be surprised what you could cope to if you had to, hob !

I'm sorry your mind went back to a nasty period...

I can at least be grateful that they listened to the 'no more meds' for now (as in no increase of them).

Thanks for the sympathy - need to sort my meds now (I've said I'll put them in one of those boxes with days on).

Hi upward, you have my sympathy too, but at least the meds are not being increased, and that's really important I feel. The HCPs are really only starting to get stuff organised to help you, and I'm sure they'll be as short of staff there as everywhere else, but eventually you'll be able to have more input about how you spend your time, and when that happens, I'm sure you'll feel more comfortable and confident. What I'm trying to say is that this is a transitional period and you're just at the beginning of what could be very good.

The weekly pill-boxes are really good, daft old dears like me can see at a glance if they've already had the day's ration.

Will add more tomorrow, hob, sorry but the tiredness just arrived. Goodnight.

Morning lovely people from another "daft old dear" here festooned with memory aids Those compartmentalised boxes are very helpful & I assumed you already used one , upward.

So sorry for being over dramatic last night , upward -I was obviously projecting my own tantrum at the questioning & monitoring .

Months ago when you were very unwell , I was very struck by the dignified - gracious, in fact - way you dealt with HCPs' intrusiveness when you were feeling less clear about the reasons for it . I'm the one who apologises for reminding you of the bad time ... I was worried that the pressure being unintentionally on you might set your mh back - so sorry for lack of tact .

Excellent they're agreeing on no dosage increase atm . shodatin you are so wise & uplifting - I always feel clearer about things reading your posts .

Hope your day wasn't littered with of non - receiving TVs and vanishing work men , & you must have been exhausted after extra early start ( am presuming you sleept all evening to have managed that post ). Hope your temp is right down & your breathing is OK , & you aren't being woken with a tiring cough ? A hacking cough would be rotten for your existing pain < over -involved > sorry . Very happy to be hearing your cheering voice as I thought you'd be pulling the covers over your head during your convalescence .

You absolutely haven't been whingeing about being questioned so closely upward,on the contrary you're very pragmatic & it's simply a healthy independent reviewing of events , patronising > . I hope this week you'll reap the rewards of your recent efforts at adjusting to outside life , increasing the dose for the time beng , & of the way you've been adjusting your expectations of yourself for the time being .

I managed a less stressful med appt yesterday , which was progress . Sorry I fell asleep before seeing your posts last night , upward & shodatin .

Thanks shodatin - just need to find a way to keep hold of all that.

I've made some , but the ambient temperature, rain and the post having come already make me think that snuggling up somewhere is today's plan.

...the only post was another MH letter - I wish that they were easier to read.

When I'm by myself I can convince myself I'm doing ok enough, but this is the third letter in as many weeks where they say they are perturbed/troubled about my current symptoms.

Anyway, how is everyone doing today? (I did go for a walk in the end, as it isn't heavy rain :) ).

Here's some virtual hot honey, lemon and ginger, to help with the weather.

Sorry I've not been available today,,having slept right through (12 hours+) to about 1.20p.m. upward, you can imagine the panic, being so many hours behind on the meds! I did change my mind about the ABs, hob, having a rather low temperature and no real diagnosis I would really like to be well again and just not without these symptoms, if it makes sense. Prescription was sent via a different pharmacy (like last week, when my Thai friend was inconvenienced while collecting them), so spent time on phone while it was being traced, then pottered outside a bit just for the pleasure, as weather was so good, then did some writing to friends and sewing, etc. until it was time to eat again - there was not much of today, but sorry I didn't get here earlier.
Am so pleased you could take advantage of weather and get out, upward, and I feel you're doing more than alright, so please try not to worry about the letters, next month they won't matter, probably.

Many thanks for hot lemon and stuff upward - we've crossed I'm afraid. I owe an apology to hob too, as just couldn't stay awake any longer yesterday evening. My memory's been crap for last couple of years, so am unsure how many medical appointments you've had in last few days, but you do deserve pats on back for managing so well, and of course, being brave enough to go to the surgery. (Didn't want any medical intervention myself, so do understand).

I do hope you're getting some help now, and that life will become easier.

Also hope TIANC is doing well, should she visit. I do miss the posts!

Oooh lovely , thank you upward . < thats > Glad you went for a walk after all & hope you weren't too uncomfortable in the cool . Thunderstorms here earlier & I needed more rest so had a nice quiet day tucked up y .

Sorry not to have been back this afternoon , bit sleepy . Really hope shodatin is gradually recovering , & that TIANC is having a reviving ( if very tiring of course ) break .

Re : the worrying letters , I think you need someone independent to help you assess the professionals' progress reports - any chance of such a thing ? This isn't very helpful to you , not getting a chance to discuss the feedback & it might lead to real misunderstandings . Sorry to sound so doomy - shodatin or madmouse will have better ideas , I'm sure .

Speaking of shodatin , I'm sure she'll suggest we help you have some more frivolous post this coming week than that upsetting stuff - up for any silly cards ? Corny jokes ? Irritating games ? Don't worry if you feel you must regretfully decline this irresistible offer

Oh dear, shodatin - you must have needed it! I hope the healing benefit outweighs being behind on meds. No need to be sorry :)

Aha , missed both your posts , shodatin! Sorry today went past quickly - no wonder , when you had to spend an hour tracing your latest lost medicines . Hope you had no severe discomfort from your late doses either .

Ah , how unsettling for you not knowing for certain what the ailment is caused by -discombobulating , as TIANC would say . ( she's still having her little trip away , I think , btw - I miss her too ). I think she would also say something cheering & reassuring . Hopefully this will have turned out to be an especially foul but insignificant illness.

No apology needed here , thank you kind shodatin ! I'm the clumsy insensitive clod who still owes you apologies for flapping & fussing .

You have no idea how helpful your good wishes & encouragement are , thank you so much . ( & one of the things I also have to apologise for is asking you to call the doctor when I know you feel the same as I do -I was thinking of you the day s /he came to you ).
Thank you , I'm hoping lots of things will be sorted out by getting the help .

Delighted to see weather so good in your area - many inches of thundery rain here , lovely for a lazy gardener .

There's so much good sense in your last line there , shodatin "I feel you're doing more than all right , so try not to worry about the letters , next month they won't matter , probably ." I agree , but think 8upward* would feel safer with someone independently advocating for her .

I think the letters are only perturbing because they keep expressing their concerns about me. People are talking about psychotic thoughts and paranoia.

shodatin , I hope your niggly bug settles soon, and that your TV got sorted.

I'm sorry I missed your morning post, hob - I'm so glad you got to your appointment yesterday, and hope it results in the right help.

Good night everyone, sleep well! I hope nobody's chilly (my carer said soe of the older people she visits have heating on).

I seem to have got rather behind again, but thankyou both for kind thoughts and good wishes. upward, you probably don't remember, but you were rather unwell, so maybe the HCP letters are referring to your history rather than current condition? I hope so, because you seem well-recovered to me and just a bit short of confidence, which isn't surprising.
Hob does have some brilliant ideas - did you ever get time to look up details of the fete in the cyber-garden?- and I wonder if you would like some back-up for a while, say an advocacy organisation, or Pals or similar? Another brilliant idea, I think, is to have something light-hearted happening, but I can't raise a creative thought at present, sorry.
Will be off to bed soon, so I hope you enjoy rest of the evening.

Goodnight upward , & hope you're not too chilly either - am definitely tempted by the lowest setting on the heater ! Glad you have a carer who chats if you feel like it ( well , hopefully ) . Thank you so much for making a fuss of me about these tiny achievements - I itemise them so you know I'm making progress

Thank you so much for filling us in on the concerns detailed in the letters : I'm quite puzzled that they say that , but have noticed that service users rather often seem to be assessed as experiencing those two symptoms when they & their loved ones disagree - I think it's a matter of context , & shodatin & TIANC will no doubtbe aable to expand on that if they agree .

It's something I'm very interested in as misunderstandings can cause have such stressful consequences. shodatin & I do hope you can get someone to assist you with preeventing these such misunderstandings . If someone as self -aware & articulate as you can have these difficulties , I think there are big faults with communication in the services .

Ah kindly - flattering shodatin , I agree on a lighthearted event & am sure we'll come up with something fun . Hope you feel better physically tomorrow , & have your mind at rest . Perhaps we could have a virtual MfW one day in a corner of the cybergarden , for refreshment & comfort - have you ever joined in an outdoor one ? Only if upward & other thread people are agreeable , obviously - perhaps they'll join in . Her Preciousness has decided to sleep on your toes tonight , shodatin , so that's that

Peaceful night all