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.

July 2011

Well, where to start.  It's been way too long since my last update as my life took a few massive twists and turns after I last wrote.
I suppose the best place to start is January 2010.......
So having made good time through California, Oregon and Washington I reached the border with about 3 hours left on my visa waiver.  No problem huh?! 
That's when it all kicked off!!!  Canadian customs were suspicious of my meanderings and after a gruelling 3 hours with my camper turned upside-down, they REFUSED me entry.  Or should I say, "suggested very strongly that I withdraw my application to enter the country".  Having, by that time, not slept for nearly 24 hours and driven 800miles that day, my mind was too fogged to really argue the point or make proper representation.  OK thought I, in my sleep deprived brain, I'll just re-enter the US and apply for a new visa waiver, make some arrangements for the camper with my Abbotsford friends and fly back to the UK from Seattle in a couple of weeks.  HUH, fat chance!!  BEWARE the U.S. Border Agency.  I'll maybe go into more detail some other time, but basically I spent 14 hours in a cell at the border post, was then unceremoniously handcuffed along with waist and leg irons (YES REALLY!), given 5 minutes to pack ONE small bag and shipped off to Tacoma Detention Centre, where I was incarcerated for over 3 weeks before being DEPORTED!!!!!!  And all this because, technically, I had not left the US and could not therefore apply for a new visa waiver.  Having by this time "overstayed" by 12 hours, I was deemed a criminal subject to the full force of the law but without ANY rights to an attourney or judge to plead my case, as these were apparently signed away with the visa waiver application. (Hell, who reads all the small print?).

So, eventually back in England February 19th 2010, very disorientated and feeling very, very low.  Stayed in a motel, thanks to my son Josh who paid for a few days there, until I could get funds sorted, my car and caravan out of storage, MOT'd, taxed, insured and onto a site.  This done, I had to go to my GP as my back was absolute agony.  He arranged a visit to a consultant within the week, who in turn arranged, in 6 days, a colonoscopy and delivered the news that I had a tumorous carcinoma - CANCER - Life just got even better.....