The Lishman Journal – Day 26

I refuse to be gloomy, I refuse to made to feel angry and upset, I refuse to eat chicken 12 times in one week…………………!!!!!!!  Sorry Lishman unit, but this is just NOT good enough.  I am now officially on the warpath and will be taking up where Francis leaves off when he is discharged and goes home Friday.  Yes, after a marathon here (well, 1.5 miles around Ruskin Park), Francis is finally ready to depart the unit and venture into the bright new world awaiting him.  The next few days will no doubt be a blur for him and us, but I’m sure he will pop back occasionally, triumphant and a new man!

Friday night was a bit of a nightmare for me.  I just did not feel “right”; you all know that feeling………something definitely not quite sitting right inside of you, but cannot really pinpoint the source.  Well, after waking myself up many times shouting unintelligible mumbo jumbo, I gave up at 4am, got up and went into the dining room where a kind nurse made me a cuppa.  5 minutes later I’m in full-on seizure mode and only came out of them after about 15 minutes.  I know it’s not long for some of you, but for me that’s a longish series.  Head was all over, throbbing, tinnitus, breathing hard to do and no balance………………. so once again, nurses brought my wheelchair and I crawled up the mountain into it and seized my way onto the bed with a pillow one side of me and the cot-side up on the other.  Finally fell asleep and had a couple of hours before breakfast and felt better by then, although even now the vertigo is bothersome and the tinnitus has really settled into high definition stereo.

It was a quiet Saturday after that, with only 9 patients (or service clients……?????), so one of the nurses was kind enough to put my washing into the machine and another tumbled it.  All in all, only took about 9 hours as I kept forgetting it and so did they! J

Today was another quiet one, although Francis happened to be looking out his window just before 8am and spied bacon and sausages being delivered…………….to the ward above us so his heightened sense of anticipation was swiftly dashed!!!!!  Not happy bunnies at our breakfast of soggy toast when he revealed all! J

My head is still revolving slowly but better by the hour.  My eldest sister brought my mother in to visit this afternoon and we had a pleasant 90 minutes before their long trek back to the car park before a £5 charge came into effect!  Hope they made it in time!

I’m sure Francis is hidden away in his room now plotting some evil deed, maybe writing to Jamie Oliver to set him onto the case of the Maudsley Chicken Farm (Aramark, the catering company, obviously own one!).  Or no, on second thoughts, I remember he thinks Jamie is too soft and reckons Gordon Ramsay would be the ideal! 

And so, this evening draws on blustery, cold and dark, but drier than the massive hailstorm, thunder and lightning of yesterday!  Supper approaches about 9:30pm………..more toast……….but good company and we can sit there venting and moaning to each other J. The ladies return tomorrow, Leoni sporting a new “ink” of a dream-catcher on her shoulder……(my favourite artefact(?)!).  Should look even better than the photo, but I’m hoping she’ll bring in some felt-tip pens so I can do some colouring in for my occupational therapy…………
I’m sure Annie and David will have tales to tell of times with their children; so sad to be away from them, but an investment in their future also!

Be good, be happy, no pain and less symptoms dear friends…….until the next time.  XX

Endeavour at the Lishman

I'm hoping this photo, taken totally with Endeavour's permission, will load as the thumbnail now.  He was helping himself to the tissues as it would appear he had the snuffles.................

The Lishman Journal – Day 24

And so another Friday comes along fair and sunny but with a nasty headache and very foggy head.  Very disturbed sleep I seem to remember, but I can’t quite grasp the wisp that would let me into the secret of “why”!  Ah well, no matter, breakfast is calling……………oh no, that’s one of the nurses wanting me to get up. J

It’s been a funny ol’ week.  Had an absolutely brilliant day Wednesday, only 1 seizure during the day and feeling “normal”, no fog to cloud what’s left of my brain or treacle to wade through, no seizures at doors slamming or chairs scrapping across the floor, sirens blaring or other patients rabbiting on until I disappeared into a dissociative one!  So feeling really good Francis and I started chatting before supper and finished 11:30pm, thinking perhaps we’d overdone it a trifle as I certainly felt a tad woolly headed by then, as did he.   I made it out of the room and into the corridor walking with my stick, but the next I remember is giving the floor a hug, thanking it for being so kind as to be there for me when I needed it and wondering who all these people were asking me questions that my brain couldn’t figure out.  Vaguely recollect one of the nurses bringing my wheelchair and me climbing the mountain to get into it, think I got into bed and slept an hour or so, but then woke needing to clean my teeth…………….do so hate the feel of un-cleaned teeth, don’t you?! J

This morning I staggered into the dining room to see Francis, Annie and David (the new guy arrived yesterday), sitting around the table already finished so I slumped down in “my” chair, (the special blue cushioned one with curvy arms that backs onto a wall to catch me when I tip over backwards during a seizureJ) and the lovely Linda (kitchen staff) brings me my revival cup of tea.  Ahhhhhhh bliss, I SOOOOOO need that first cup of tea!!!  The day went on to include Leoni achieving her first ever walk down the corridor (wearing her very fetching Velcro-ed leg brace) YAY LEONI!!!!! (see her video on Fb).  Then my CBT session with my lovely Italian therapist…………..lasted a whole 40 minutes before getting so treacled up I could speak J  Still, an improvement on last week.  Now we just have to find out WHY!!!

Today, Francis went on an away-day to Folkestone.  He told us it was to see his home support worker that will be his liaison once he is discharged from here (coming soon!), but we reckon it really was to visit the fish restaurant on the sea-front for lunch and dinner! J

And now Annie has gone home for the weekend, Leoni was picked up and is driving swiftly toward the Fens and David has gone home after his first day to take his young son to toddler classes tomorrow………………well, so he says, but we saw the glow in his eyes at the thought so are betting it just might be Dad wanting to go play choo choo trains and “ride ‘em cowboy”, (or whatever they do these days). So an emptyish unit this weekend.  Wonder what mischief we can get up to.......................???? J

My visitor has just left………………..brother-in-law keeping a close eye on me and reporting back! J
It's so nice being less than 4 miles from my youngest sister and mother, apparently they, (or maybe my other sister? can't quite remember which) are going to try and visit on Sunday, weather permitting.

And so a cuppa in front of me, supper an hour away and then yet another day over, sleep beckons and a Saturday of ????????  Well, whatever comes tomorrow I’ll enjoy the experiences to come, chats to have, with new and wondrous reads on Facebook.

Be good, be kind but most of all, look after yourselves! XX

The Lishman Journal - Day 20

Well another Monday come and heading out of the door swiftly.  I had my FIRST ward round today!  Was called into a room (fortunately air-conditioned), full of about 15 people, all parts of my “Multi Disciplinary Team”, most of whom I had never met! J  So pleased I learned the art of either “tuning out” those who are not directly in touch with me in such meetings or imagining a certain lack of clothing to reduce their imposing status! J  Concentrate on the Consultant and ignore the rest J

Seemed like an hour and was probably only 5 minutes really, but first one is always the worst.  Next time I’ll have more questions and be a little more with-it I hope.  My daily seizure tally is reducing each day which I do like.  Even with no specific treatments, it appears that exposure to all my triggers is inuring me to their effects………………….well, I hope so anyway.

I was due my first physio session today also but 4pm came, then 4:30pm and finally 5pm and no physiotherapist……… ??  (Francis reckons maybe my reputation preceded me and scared her off…………. J)

The lighting continues to be a source of irritation, but lessening also.  They have gone “green” and installed LED replacement tubes, but not changed the diffusers……oh naughty, naughty penny pinchers!  I’ve also noted the emergency light fitting that’s in alarm, the empty air freshener and the broken ventilation fan………………….really like going back to work, but totally frustrated, without the ability to actually FIX the darn things coz I can’t get my tools!!! J

Dear Annie returned this morning from home leave and much as it saddens me she is away from her family, it sure was lovely to have her back in “the group”.  Such a sweetheart, she complements the awesome Francis and Leoni as part of our “get fit again” group with great kind-heartedness, humanity and cognizance; sadly lacking, or rather suppressed qualities in current society.

Meals today were, shall we say “intriguing”, but as usual I have eaten too much and feel totally stuffed……………..wonder if I’ll have enough willpower to forgo supper’s usual toast and peanut butter???  (Nope, I doubt it either! L).

Tomorrow I promise that Endeavour will make an outing somewhere.  He frowns at me each night as if to say “Hmmm, not impressed, sitting alone in here all day”! 

Wishing you all a good night, symptom free, or at least less and sweet dreams to all.  X

The Lishman Journal – Day 19

Goodness gracious me, 6 days since I last managed to write…….where does the time go?
It’s been quite a trying time still but I can notice a difference now.  I’m not quite so jumpy or prone to trigger into a seizure at the noises which I used to.  It’s not due to any treatment as that only started on Friday, more getting used to them I believe.  Whichever, it’s nice to feel less “on edge” and I am now walking with my sticks again as my balance has now returned to my “norm” of standing on a corkscrewing ship.

I suppose I’ve come a long way from the week before Christmas and now feel comfortable to launch into the full treatment, starting with my first physio session tomorrow afternoon.  The CBT session on Friday was really a chat about who I am, what my life was in general and me learning to translate her accent………………….. lovely Italian lilt, but just as difficult to follow sometimes as many of the nurses here.  I’m certainly having my eyes opened as to the cultural conglomeration in our fair City these days.

I’ve been talking so much that Leoni and Francis have taken to wearing earplugs, but my speech is becoming more fluent and comprehensible (I think), even if the content is unquestionably twaddle.

The bad boys of Camberwell must’ve been abroad this weekend as the sirens have dropped whilst the planes increased.  Maybe they had a weekend on the razzle in Prague?

I’ve only got 2 chocolates left from my son’s Christmas present of toffee caramel fudge……………had to sacrifice 2 to a good cause last night.  One of the nurses was having a crisis and was sore in need of chocolate to sooth her so 2 were donated to good effect.  And on that note, our Housekeep of 3 weeks received a phone call at 4:10pm Friday afternoon to inform her she would not be returning to the ward on Monday and to report back to her old job as receptionist to 3 doctors in an empty unit on another site.  This was a shock to say the least as she has made a huge improvement in her short time her, concentrating on bettering meals, cleanliness and generally being a wonderfully thoughtful person who occasionally would pop up with maybe a chocolate slice or cappuccino from Costas!  Deeper, darker forces at work in the HR department apparently!

Francis is whipping up enthusiasm for an outing to the local Ruskin Park sometime during the week.  We’ve been promised it’ll be considered and we might even get a picnic to take.  I’m trying to find out if there’s anywhere for an ice-cream.  Strangely this is the first hospital I’ve ever been in that does NOT serve ice-cream EVER!  Chicken, chicken and more chicken in various guises, tinned fruit at every meal (as long as it hasn’t been thrown away before I’ve gotten that far………….more on that subject another time) and yoghurts flooding the place.  BUT, we did have a roast beef dinner today with all the trimmings………….well, a yorkshire, carrots and roast potatoes………………..they neglected to actually tell us about the broad beans on offer too and threw the whole lot away untouched!  Something they do seem keen on is rushing the meal time, so me being me I'm digging my heels in and I WILL get the message across that I do not like main course and dessert served at much the same time……………there really is no room on the table along with the hot sauce, Daddies sauce, vinegar and Ribena!!!  I suppose I’m just being bolshie, but a protected hour’s mealtime means something to me, not just shovelling in calories, but a friendly, convivial conversation too, enjoyed in the company of wonderful companions on our voyage of self-discovery and healing.

Well, it’s now Sunday evening and time to rest, gird our loins (NO not that, look it up Leoni) for a new week and slumber blissfully as well we may.  However, after Francis’s antics this evening concerning stockings, suspenders and basques(?) I’m am maybe going to stay awake all night with matchsticks propping open my eyelids rather than suffer the nightmares and visions that his wearing of these garments engenders……………….apparently Donna and Bridget are to blame for these fetishes????

And on that note, Goodnight, best wishes to all and remember…………..all is not what it seems……only some of it.  Working out which is which is the hard part!  HUGZ XX

PS Check out Leoni's new wheelchair, has funny ribbly propeller bits on it and in the cutest red!  Can't stop her rushing all over now.  No more summonsing a nurse!  :-)

The Lishman Journal – Day 13

And so starts a new week.  A quiet(ish) Sunday was spent dreaming of white sandy beaches, warm tropical sunshine and swimming in tranquil clear blue oceans……………..trying to ignore the jets of those just returning from those climes.

We have a few new faces on the unit now.  2 or 3 seem to be room-bound but a very pleasant young mother in her late 20s joined us this afternoon.  Her poor, worried husband went off during our dinner and bought her a huge bouquet of flowers that I can now smell all down the corridor………such a wonderful fragrance for us and a stunning reminder of his love for her.

Whilst many of the others had their “ward round” today, where their consultant and other medical team all get together and talk through progress (or lack of), concerns and questions, I have still to start the true schedule, so roamed around the corridors getting in people’s way and cadging cups of tea every so often.

My new (second hand) ward wheelchair which was delivered on Friday, whilst much easier to manoeuvre than the temporary one, also reeks of damp.  Think it must have been stored somewhere unventilated and suffered the musty, dank and ever present whiff of mould.  L  However it is chrome plated and so sparkles in the occasional sunlight. J

Been an iffy day for me seizure and speech wise.  I’m finding I run out of puff every couple of hours and start wading through the treacle again as the fog thickens in my brain.  It’s time then to head for bed and a 30 minute power nap.  The world becomes much clearer again afterwards and I can head off either for another cuppa, or a meal.  They both seem to come around so often I really don’t see when I’ll have TIME to undergo any treatment sessions!!!! J

I now have to admit a slight indiscretion………………my afternoon siesta was so disrupted by the slamming of doors that I just had to get up, write a couple of polite request notices and selotape them to the doors!   We now have a wager as to how long they will remain up! No bets on whether they are effective of course, the answer being obviously NO from the get-go, but it made ME feel better J

Oh yes! Francis and I managed to get the Wii working in the Conference room!  After 2 hours faffing around learning how to turn it on and connect the remotes, after 10 minutes 10-pin bowling we both were summonsed to supper, however he went with a migraine and I felt nauseous so there is a distinct possibility we are both sensitive to the TV screen and won’t be doing much more gaming!  (I’ll admit I did try a little Wakeboarding at the Resort later in the evening, but had a seizure and thought better of drowning in the sea so switched off, packed away and headed for bed).

And now supper is once again beckoning.  I do hope everyone in the real world outside are well and not having too many symptomatic issues.

Bye for now XX

The Lishman Journal - Day 11

Oh dear, so much harder than I ever dreamed to adjust and acclimatize to such a change in surroundings.  Although I am still in my 2 week “get to know you” phase and as such have no scheduled treatments, I am finding I have so little time to do anything productive (like writing here or keeping up with the Fb groups). J

The last week has been a whirl of cacophony and triggers.  After my quiet, hermit-like existence back in Hampshire, Camberwell in general and the Lishman unit in particular is one long round of noise, light, smells, stimulation and communication.  There must be so many naughty people living around here because the police sirens are pretty well non-stop; even 5am this morning.  But the “locals” don’t notice them, or the aircraft that bounce off the roof every 2 minutes, or even the slamming doors………………do you think maybe I am hyper sensitive to noise???? Hmmm, maybe so J

Just had my first “outing”.  20 minutes in a very watery sun and almost reached the main entrance before the seizures once again got the better of me.  So now I know even the effort of wheeling a chair is a trigger.  Well, at least I know now my limits at the start……..now to see where I can go by the end on my stay!

And now to Monkey.  I’ve lost track of the suggestions received (sorry), but one sticks in my mind along with so many brilliant ideas.  And so Endeavour has been officially named………..and here he is reclining in the comfy bed, along with an idea of my room for another 10 weeks or so.  Thank you all so much for your suggestions and he, (at least I guess “Endeavour” is male?), may well yet come to have additional names.

 

A warm and friendly atmosphere, just like home really! :-)

 

And so tea time approaches........one long round of food and drink........so much for losing a couple of stone whilst I'm here! :-)
I do hope you are all enjoying a lovely weekend.  see you again soon............... xx 

The Lishman Journal – Day 3

Well, what a day.  Unfortunately no internet as I think the gales blew the place apart!  Tiles off the roof crashing into the garden, windows trying to turn themselves inside out and concerned patients screaming at the thunder and lightning! L

Apart from that, a calm day in the unit, still mostly on holiday but I had my first Psychiatrist session this morning!  5 minutes after starting she said maybe the hour had been enough for me the first time………….AN HOUR????  Wow, time dilation!  Yes dear fellow FNDers, as you know, I talk too much! J  (but really do wish I could remember her name!). :-)

Ooooo, someone found a cushion for my wheelchair………yes, they’ve allowed me to borrow a real, live, SELF-PROPELLED one.  So my greatest wish these last 8 months for “Independence” has finally been granted!!! Now my next goal is to get out of it!J  (Though think I’ll wait a few days longer until my balance has totally come back).

 

We are managing to enjoy each other’s company, compare notes, thoughts, experiences and symptoms of our own FND.  All finding insight and recognition of previously unrealised common issues.  The main help is we laugh together, appreciate our common experiences and acceptance of our symptoms in each other.  If I’m in a seizure the conversation just continues on and I join back in when I can. So much better than hearing an awkward silence as the people around you are unsure what to do.

I had my first shower here this morning AND a shave now I have my razor.  3 weeks growth fell away in 10minutes.  And I managed to have my room furniture moved around so am a lot more comfortable and in a roomier room. Shame it took me 7 members of staff to go through to arrange it though. J (I have to keep reminding myself, this IS the NHS)!

And so another day comes to a close, feeling more settled, happier and confident this can work!

 Sweet dreams to all and to all a good night.

PS Internet is back, so posting now.

The Lishman Journal - Day 2

Hello my Fellow FND Experiencers, relatives and friends...............been wanting to check in all day, but it's been quite a painful one today as I've been experiencing an "overload headache"; you know, the ones like a vice around your brain. :-)
Well, Day 2 in the Lishman unit at Maudsley hospital (I think, although have lost track of time due to the sensory overloads situation).  Nothing specific will start until Monday (after the holidays) and even then there will be a period of "getting to know" each other; me the unit personnel and them me.  There are THREE, possibly 4, of us being treated for FND so should be interesting times.  I've already badly overdone it talking with Francis.  We are kindred spirits in somewhat parallel lives, even occasionally crossing pathways, it appears.
We have both now overdone the talking and are suffering the consequences, but WELL worth the resultant symptoms for the peace of mind it has given us both I believe.
Everyone is friendly and helpful (as they can be, given their differing illnesses) and most importantly the staff so far, (although I'm told not all), are understanding, or at least accepting, of our condition.  From my talks it appears there may well be some who need a little further education :-)
I have been unable to read through the last few days’ posts on our FNDHope Facebook page, so please forgive any misses.  If you do particularly wish to comment please send me a PM, either here or there, as I find those easier to deal with, albeit slowly, so please bear with me.
Best wishes for a wonderful and much better 2014 to you all, sufferers, carers and relatives alike!
HUGZ x

THE SOCK MONKEY - I would like to personally thank the amazing generosity, kindness and thoughtfulness of the anonymous benefactor who sponsored my SOCK MONKEY!

He (at least I think he's a "he", but I am unsure how to sex a sock monkey), was sponsored before Christmas and sent to my home by Jessica and Terri-ann whilst I was in hospital locally. I didn't expect to be able to see him until my return home, but was fortunate enough to unpack a truly wonderful surprise New Year present upon my arrival at the Maudsley!
A huge, heartfelt THANK YOU to whoever his sponsor is, you brought tears to my eyes and running down my cheeks as I opened his brown coat of postal packaging and stoked a warm glow in my heart. X
PS any suggestions for naming him please? Ah, no, better wait until tomorrow. I shall have a photo taken of us together and perhaps you'd all be kind enough to provide some suggestions?..........

Last Day of 2013

It has been a rather long and eventful 4 years.  Suffice now to say I start 2014 in Maudsley Hospital and the eve of a 3 month investigation and treatment program aimed at restoring my life to somewhere nearer normal and once again independent.