The Lishman Saga Continues............Outpatients or Out OF Patience?

And so the Saga continues………………..

Yesterday was a day I’ve been waiting for nearly 7 months………..my first Outpatient appointment with my Consultant Neuropsychiatrist after my 3 month Inpatient treatment at the beginning of this year at the Maudsley.  Well, I say my first, actually my second date apparently, but the first one, some 2 months ago I didn’t attend and they wrote to my GP complaining………. However what they forgot was I am not psychic and as they hadn’t sent an appointment letter I wasn’t aware of it!!!!

So, the GP telephoned, explained and arranged a new appointment, confirmed it with both them and myself a couple of weeks ago and booked me Patient Transport to make the journey (about 40 miles, but right through the centre of London).  The big day arrived, Transport came a little later than I’d expected , leaving just 90 minutes to make the trip for 3:30pm appointment………and of course this being London and in torrential rain……2 hours later we got to the hospital 30 minutes late already.  However, 30! minutes later we managed to parked (taking into consideration this is an Ambulance!) and I was off-loaded in my chair.  Now bearing in mind I STILL had no appointment letter, just the name of the department in Kings given to me by my GP, not quite the same one as the transport crew had, but close enough (I had Neuropsychiatry, they Neuropsychology).  We shot into the nearest entrance and made a bee-line for the Helpdesk.   Now by this time, 2½ hours of being bounced and jolted around corners, I was a mess of seizures, little cognizance and virtually no speech so the crew were in charge.  “Oh yes”, says the helpdesk, “1st floor and to your left, lifts are just over there”.  10 minutes later we managed to get a lift that actually worked!!!! Got to the department door and I looked at the label “Cardiology”???????   Ummm, NO, don’t think so!  Anyway, the crew and I waited patiently whilst the receptionist nattered on the phone….and waited………..and waited.  Eventually a nurse came by and she was almost grabbed physically by the crew.  She was kind enough to search their computer system for my name, which she found, but NO appointment or place!  Well, long story short, we went around and around that darned hospital, led to different places firstly by a nurse, then a Sister and eventually a porter (“who knows the whole hospital”), riding in “staff only” lifts, me having seizures every 5 minutes and doctors enquiring as to my fitness to continue and “I’d suggest you take him to A&E”.

Well, you can guess what happened……….no Department, no Appointment, NO Consultant and not even a cup of tea!  By 5:30pm the crew had enough, bought me a bottle of water (which I promptly threw all over the floor after the first sip during another seizure) and stuffed me back in the transport ambulance.  Then had a nightmare 2¼ hour journey back home in torrential rain and the rush hour.  Fortunately I don’t remember too much of it, but remember collapsing into my bed at 8pm once they dropped me off and awoke 10am this morning!

Guess it’s back to my GP on Monday to ask her to rearrange yet again (and no doubt another 3 month wait?).  BUT this time I want DETAILS!  Exactly where, which building, which department, telephone contact number, colour of the walls............... the works! 

I’d hesitate a guess that overall cost was in excess of £500, maybe more taking the consultant’s time into consideration also (assuming he actually was waiting for me!)!  What a WASTE of time, money and effort. 

I wonder what joys the three local hospital appointments next week shall bring???

And now the bright note...........my new wheelchair self-propel wheels are MARVELLOUS!  So much easier and more comfortable a ride than those previous little "attendant" ones I was forced to have over a year ago :-)

Trials and Tribulations

Well how fast things can change!  As you may know, my GP came a-visiting on Wednesday to tell me she had arranged a 3 month course of vitamin B12 injections, along with regular blood tests to keep a proper track of it.  Added to which, she has done a referral for an investigation I have been hoping for over the last 18 months now.  How overjoyed was I !!!  It is such a good feeling when something you have strived for so long is finally recognized, accepted as a possibility that needs investigation and put into motion.  My good mood knew no bounds and I slept well that night.

Then Thursday morning broke (well, noonish) and a knock at my door…………a Community phlebotomist come to take my bloods! Yikes, how efficient is this?!  But wait, “having come to take the first blood tests are you not also going to give me an injection”?  “Oh no” says the young lady, “we have your prescription but need to wait for the results first”.  “Um I don’t think that was the GPs idea”, says I.  “Oh dear, that’s what my colleague told me”.  OK, so not the end of the world thinks I, just have to wait a few days longer, but annoying because the idea is to have this course no matter what my current level is, so there is no point in waiting for a result. 

STRIKE ONE – slightly wobbly but just a little, so "wait, we can do this”!…………………..

So the phlebotomist leaves with phials of my hard earned blood and I open my emails to find one from my GP…………………..SHE’S LEAVING!!!!!!  She didn’t want to tell me when she came because she saw I was struggling and didn’t want to overload me further.  Lovely sentiment Dr. Hoff, but do wish she had told me so at least I could have thanked her in person for such wonderful help and support over the last 3 years.  I understand she wishes to spend more time with her children and the surgery would not offer her that flexibility, but oh boy do I feel abandoned and a little frightened.  Apparently my new doctor is a newly qualified child.

STRIKE TWO – Definitely on very boggy and treacly ground, up to my waist………………..

3 hours later another message pings into my Inbox……….”Just a short note” from my Adult Services Support Worker……. SHE’S LEAVING!!!!   Well, not actually leaving, but she’s off my case, onto “another project” and already handed me to another worker, whom “will contact me soon”. 

STRIKE THREE – And I'm OUT!  The Darkness descends totally, mire over my head - sucking me deeper fast!

Definitely feeling an overwhelming sense of loss and NOT a happy bunny.  Losing BOTH my closest and most influential support in one day is just too much.  The idea of having to go through everything all over again with TWO new people is just……………well, both terrifying and daunting.  (And today of all days).  How on earth am I going to reach the same level of understanding and commitment, knowledge and comprehension with the two most influential people in my world at present? L

And so a bad, dark and melancholy 24 hours followed, but tinged with bits of bright sunlight in a friend coming to visit and a lovely hand-drawn card from my eldest son.

So Saturday dawned (and yes folks, I actually SAW it dawn!) very early.  I’d had a very disturbed night, mainly for “comfort breaks”, but usually I’ll just fall straight back to sleep.  Not really sure what caused me to awaken as I did but I had a lovely cup of tea, door wide open, feet up watching dawn’s early light, smelling the fresh, cool air and realizing life is fine really.  Obstacles have been hurled at me, hidden to trip me up and cleverly disguised as aid, but I’m still here, the world is spinning slowly and offering an amazing place to explore and experience.  All I have to do is take the support you all provide, use it to climb out of the darker times, grow stronger both mentally and physically and get out there and again LIVE LIFE to its utmost and fullest extent.

I know we can ALL understand the “despondent” times, the “why me?” times, the “I just cannot go on like this!” times, but stick in there everyone.  There is just waaayyy too much still to enjoy and whatever garbage is thrown at us,

Together WE CAN Endure and Overcome, Enjoy and Experience!

The Heart of FNDHope?

Today the Postie delivered a package.  Nothing unusual in that I hear you say.  Well think again gentle readers.  When I saw it I was Flabbergasted.  Yes my friends, my Gast was completely and utterly Flabbered!

This is what I saw laid on my worktop:

 

 And upon opening it, with tears running down my cheeks, this is what I found:

 

 

 

 

 

 

 

 

 

 

 

 

 

What an amazing, thoughtful, incredible gift to receive.   We all support each other in this insidious condition, but some have a talent, a humanity and deep belief in going the extra mile to make the rest of us feel there is good in this world, understand we are not alone and raise our spirits with their kindness. 

Over the last few months I have been the lucky recipient of a few thoughtful gifts from 3 or 4 very special people who have supported me and raised my spirits just when I most needed them. 

This package combines the spirit and ethos of all that we hold dear in FNDHope I feel.

 

 

 

To you all, and you know who you are, a huge THANK YOU.  (and yes, that is an Oxford coma, I think, Francis and Leoni) :-)

However, a very special and heartfelt THANK YOU to Laura for today’s amazing surprise!  Although I've been a long time in recovering from this darkness, descended upon me after discharge from the Maudsley Hospital's Lishman unit at the end of March, the receipt of such understanding, support and thoughtfulness reminds me that the love in this world is the most special gift we have.

My love and best wishes to you all in your own journey to conquer FND. 

You are all AWESOME people.  It is so comforting and wonderful to know WE ARE NOT ALONE

Legacy of the Lishman

Oh gosh, oh golly.  What a long time it has been I see.  My sincere and heartfelt apologies to all my friends and acquaintances whom have enquired after me.  I’m so terribly sorry not to have been in contact, or even acknowledged your enquiries.  I am finding survival a mammoth challenge and my mind veers away from any type of interaction, be it verbal, written or direct.  Even my daily meal delivery causes me stress and inability to communicate.

My discharge from the Lishman was on 31^st March and I have been in some type of “frozen time warp” ever since.  I’m still there in fact.  I think the shock of finishing, what was by all accounts, really the best chance I had in this country of investigation, treatment and recovery, was too overwhelming because I went back to exactly what I had left some 4 months previously, NOTHING.  Whilst my condition certainly has been improved by the 13 week programme, I am left with seizures and speech issues still, albeit they are much less in severity.  Never the less, they continue to hinder and shape my daily life and now I have no hope or expectation to get any further with recovery.  This is what has confounded me I think, the fact that “this is as good as it gets”!  All last year, whilst waiting for admission, I at least had the “anticipation” of investigation, treatment and recovery, whereas now I have nothing but to come to terms with being forever-more dependent upon others and useless to myself, no hope of further progress because I came out of the Lishman unit not much wiser about the reason FND is affecting me than I went in.  

I have had no real support from any source locally, or in fact from the Maudsley either.  Deafening silence has reigned and I am completely waterlogged in the torrential downpour.  I survive day to day, but progress nowhere and see little future other than my current “subsistence” existence.

Whilst my GP has been quite supportive, she has achieved very, very little and I still await any contact with my local mental health team that I was promised I had been referred to by the Maudsley before my discharge.  My (new) Adult Services support worker did start off enthusiastically, but the original bloom of good intent has subsided into a contact email once or twice a month saying, effectively, she is still trying, but getting nowhere.  There was talk of me being offered an apartment in an “extra care” facility a few miles away, but that has also seemingly ground to a halt.  I did finally see a physiotherapist last Friday, but she is unsure what she can achieve as the Maudsley “paperwork” gives very little guidance apparently and I am quite intolerant of the “standard” physio exercises.  I managed to gather sufficient mental momentum to look for a mobility scooter and even arrange a demonstration, but the one most suitable requires a modification to its seat.  I was promised a call back within 48 hours as to the possibility of achieving this and cost but, despite twice contacting the manufacturer requesting an update, that was nearly 4 weeks ago!

So I’m left back on the old treadmill of hospital visits once or twice a week (up to my 225^th visit in the last 4 years), whilst I bounce around the various consultants, the vista of at least another 2 operations in the near future, failing eyesight, possible investigation into a genetic disorder (if the GP can ever get an answer)…………….oh, and Botox to my jaw muscle on Thursday!  (The recommended use of low dose amitriptyline “pain relief” didn’t work).  Plus my vitamin B12 level has once again dropped dramatically low.  My GP has decided to investigate my “Intrinsic Factor” in an attempt to find out why it is jumping around so much, but that in itself has become a herculean task.  It took over 3 weeks to arrange one simple blood test and actually get it taken!  And even though my level is low, she won’t boost it until she knows why. (Oh, and I'm STILL awaiting the result!) 

I do try to be philosophical about all these issues and keep telling myself it’ll all happen eventually, but meanwhile my life drifts by and is gone, vanished as if in some ethereal netherworld, and I feel inconsequential, almost irrelevant, forgotten and unseen in a world that is bursting with so much interest, so many experiences to be had, such splendour, magnificence and vitality.  Unfortunately I can no longer share in any of this and I do wonder if it is all worthwhile sometimes.

Having said all that, to those of you already on the list to go to, or considering applying to go to the Maudsley, Lishman unit, PLEASE DO GO!  Whatever the outcome, achievement is very much on an individual level and my experience most likely will vary greatly from your own.  It is most certainly worth every sacrifice you have to make to attend and receive the benefit of their experience and professionalism.  Even if I, and others who attend around the time I was there, found some areas of care to be “lacking”, overall they can achieve great changes for their patients.

I will try to return to Facebook over the coming days and weeks, but please bear with me. 

Once again, my apologies for disregarding your kind enquiries, it was with great reluctance and shame, but I am finding it a huge issue trying to interact.

My best wishes to you all, my hopes that FNDHope is thriving, along with you all and remember YOU ARE NOT ALONE.

All my best wishes,

Duncan X

 

P.S. Endeavour says "Hi" and promises to communicate more soon.

The Lishman Journal - The Last Weeks

This post below was written during my second to last week in the Lishman unit at Maudsley hospital, but never posted as I had a very, very poor last week and was in an excruciatingly bad place, one I have never been to before or ever wish to again.  Neither I nor the psychologist were able to clarify any reason for it, other than my own very weird and highly unlikely theory that my mind was trying to put all my physical symptoms together and tell me my cancer had returned.  As soon as I had this “revelation” my mind cleared and within 10 minutes I was almost back to normal after 4 days of horror.  It remains to be seen how likely this is when I have my next cancer check-up in May.
So anyway, here is what should have gone up before I was discharged:-

The Lishman Journal  - Day 79 (Thursday 20 March)

 “I know, I know, it’s been a long time since my last blog and I do apologise to those interested in coming here.  The last couple of weeks have been pretty intense and I’ve been unable to concentrate enough to write.  Also the end of my time here has raised some issues both for me and for the unit itself, particularly in timing.  I have been unfortunate to encounter “end of NHS year” holiday entitlements being taken at just the time when I most need the therapy and support to understand myself and this condition more.  It’s difficult to explain, even to myself, but the light dawns very late in the process and that is when the questions start and need to be answered.  Those going through CBT may well understand where this is coming from, maybe not, but all I can say is it’s an amazing experience to go through!

Many great and interesting things have happened here during these last couple of weeks, but for the life of me I cannot remember them so will have to wait for help from the others, especially Leoni with use of her daily diary!

Tomorrow I have an away-day afternoon back to Frimley Park hospital for a couple of Eye clinic appointments and on Saturday an investigation at Kings into why my feet and ankles are swelling so much.  Apparently this Echo was arranged for LAST Saturday, but Kings found it difficult to phone here, writing instead to me at the unit and this letter arrived, somewhat tardily, just yesterday (Wednesday)! J

It is a somewhat sad week also as we have lived together as a group for some time now and relationships grow quite intense in such a situation.  One of the “old timers” left for pastures new this morning and I’m sure his presence will be missed, as will mine next week (or not! J).  However this is also a time where the group dynamics change and the therapeutic value of peer relationships become more obvious to those taking a more active role.

I’m sorry this is a more sombre tome, it is hard for me to realize that oh so soon I shall be returning to a life that has to be modified to enable me to live an FND-free (minimized?) life.  Also Dave T has once more had to make a trip to Kings A&E to check out a wrist injury from this morning.  He gets withdrawal symptoms I believe, as he was there just last Monday after having a seizure in the street coming back from Camberwell.  I understand his request for an Air Ambulance ride was unsuccessful, but he had a road ambulance PLUS a paramedic car attending him whilst being just some 100 metres from the A&E entrance!!!! J”........................

I will write again about my discharge and what has happened since then, but for now I shall post this and regain some composure for the rest as I am currently finding any dealings with FND to be terribly difficult, possibly due to the realization that my continuing speech issues and seizures may well be the best they ever will be………….I hope for better, but expect the worst………

My very best wishes to you all and I promise to return just as soon as I can to all my friends on Facebook.  I am aware that many of you have sent me good wishes and messages.  I apologise for my lack of response to all these and hope you will bear with me at this time.  I am finding this "return to normal life" a very difficult time but for any of you awaiting your induction into the Lishman unit, or thinking of asking for a referral there, please DO go and see how they can help YOU!

The Lishman Journal - Days 61 - 63

I wanted to write another journal entry today because I have newsworthy substance to impart.  

As you may have read in the previous journal entry, on Saturday I went walkies to the top of Denmark Hill and on Sunday I walked my gorgeous visitor to the hospital entrance and back.  This gave me the realization that I CAN DO THIS!  I CAN stop having seizures, I CAN walk again, I CAN be in a noisy, bustling, crowded space, I CAN talk normally, intelligibly and authoritatively.  Basically I CAN HAVE MY LIFE BACK.  With independence and options and enjoyment and love and companionship.  All those things I had long ago lost to illness and misinterpretations.    This really IS going to work!!!!!

So, in this heightened state of self-acknowledgment and awareness, Monday was “Ward round day” and I was able to decide, along with the team, on a discharge date!!!  And so it is to be that, on the 25^th March 2014, I shall be leaving here and returning to Hampshire, once again to take on this wonderful world of ours.  I wonder what will befall me upon my new pathway through life.  I am still unsure as to whether I shall be able to drive and I am finding this question to be increasingly important to me.  Upon this decision depends my future moves.  I am starting to allow myself the faint hope of being able to MOT my car, have it serviced, hook up my caravan and go a-roving for a couple of (few) months into the summer.  I have decided every other “procedure” I should re-organizing at the hospital I shall put on hold.  They are unimportant in the grand scheme of things (at least, until my arm drops off and the other bit I don’t use any more……..).

Leoni, now in her home stretch, has choices to make and we are all encouraging her in her efforts to push on through the pain and despondency, irritation and annoyances, bewilderment and past to achieve her goal.  I’d like to walk out of here to the main entrance with her beside me to see me off………….. (are you listening L????) XX.J

Today, being Shrove Tuesday, our resident cookery team came up trumps once again and out lunch was capped off beautifully and tastefully with pancakes and a choice of toppings – lemon and sugar or ham and cheese or chocolate spread………………..mmmmmmmmmmmmmm. THANKS PEOPLE!

We also had 2 newbies arrived, both ladies so it’s been a fairly hectic day all told.  Quite surprising how new arrivals can cause such a change in our “regime”, especially in the dining room with seating arrangements.  I must say we do NOT do well in changing “OUR” seating plan!! J

And so to close this evening, sitting in the dining room on a towel (stops me sweating against the chair seats….so much more comfortable now but won’t go into detail)J and awaiting supper……..can I cram any more in????

Until tomorrow dear friends………..sleep well and may tomorrow bring even better things to you all………. XX

The Lishman Journal - Days 46 - 60

Well, well, well……quite the couple of weeks just passed by.  Very eventful and quite a catharsis for me.  So what has happened?  Leoni managed to have a few seizures which Dave 2 then in his heightened empathy mirrored and repeated himself, only he broke his other wrist in the process……..we’ve had two Group FND psych sessions, I not only walked to physio during the week, took a stroll this morning ALL ON MY OWNSOME,

but also this afternoon "marched all the way to the top of the hill and marched back down again"…..(into Camberwell); I estimate about 1 mile all told.  An amazing achievement for one whom, just 8 weeks ago, was almost wheelchair bound.  Gaz and Linda were incredibly kind and took myself and Leoni (Linda’s daughter) to the Fox on the Hill for lunch……...and what a lunch!!!   Gammon steak, 2 fried eggs, mushroom, tomato and chips, all washed down with a glass of full-fat Pepsi! J  It is humbling to realize there are people such as these two who were in a car accident last Saturday (along with Leoni!) that wrote the car off, yet 6 days later drive all the way into London to visit and push TWO wheelchairs around Camberwell (yes, unfortunately although I made Camberwell walking, I then had to resort to the chair for a couple of seizures, a swoosh around Morrisons the supermarket and a push back to the hospital).

But I jump ahead.  Last weekend Leoni went home for a long weekend of planned revelry and debauchery (to say nothing of alcohol), however on the Saturday afternoon was unfortunately involved in a 4 car bumper-cruncher (fender-bender for our American cousins) which left all three of them very shaken and bruised, torn ligaments and whiplash and car-less!  So her Sunday 20^th Birthday was somewhat washed outL.  However, we here at the Lishman are not daunted and put on a “Lishman Birthday Bash” for her on Tuesday evening.  Dave 2 had baked a chocolate cake,  
Dave 1 had made an amazing Marvel 3D collage and the whole place had signed a card, some totally indecipherably, but done all the same.  So with a smile on her face she scoffed chocolate cake until the pain and stiffness was but a memory………….or was that the oromorph???J.

I had an unfortunate run-in with our DWP - Depratment of Works and Pensions (yes, I actually do mean dePRATment!!!) which put me into a foul mood and nearly 2 days of ongoing seizures but, as usual, I managed to bob to the surface again whilst thinking “well, if they want 3 years repaid it’ll just have to take the next 20 years”!! J.  It also brought me to the realization yet again that life is worth living for what I can DO and EXPERIENCE, not what money/possessions I have (or don’t have).

And so to Gardening Club on Wednesday with a few photos, but mostly the lovely fresh air, out in the garden with a few hardy souls and a wonderful feeling of nature renewing, plants growing whilst I too renew and regrow……….. I know, a bit schmaltzy, but a very strong truth in the analogy.

Thursday was my first ever outing to Camberwell, albeit in the capable hands of my lovely OT.  It certainly was a “baptism of fire”.  I had nearly reached the shops walking when one of our lovely local ambulances from Kings A&E drove toward us leisurely, but just as it reached us, switched on their siren!!!!  You can guess my reaction……………..immediate seizure!  Luckily as I toppled sideways I hit the fence beside me and managed to freeze onto it.  But succeeded in then carrying on and bought a couple of shirts to join the wonderful present from Laura Cordell!   We even managed a pot of camomile tea in the Love Street Café………….J.  The return chairbound journey ended similarly as another ambulance decided it’d be fun to watch me jump backwards in the chair…..ah well, I’m sure they didn’t really mean too………??????

Ah yes, just been reminded, Thursday 20^th was a memorable one (or would be if my memory worked)!  Three of us had Chinese YUMMY take-away (and full-fat coke)!  Spur of the moment decision and WELL worthwhile.  My tummy really appreciated the subtle taste and harmony….plus the chunks of pork and beef, prawn crackers, chicken balls, spring rolls.………………….! J

I suppose I should add here there was only three of us because everyone else in the “group” had buggered off home for the weekend!  Kinda why we decided to have one then to cheer ourselves up!

Now ever since Tuesday we have been playing a game of “hunt the parcel”.  The beautiful Margarita Baird Ulhaq tickled my interest by asking “had my little parcel arrived yet?”  No Margarita, nothing from north of the border, but Jeannie Maskery had sent me a great little package………..and a wonderful long read when I find myself with nothing to do during the rainy days and my concentration will allow.  So the hunt began, nurses et al. organised to search but to no avail until yesterday as I was passing the office I heard my name called and saw this huge box on a desk.  I was asked “is this the one?” and sure enough…………..bloomin’ great Amazon box in tartan (well, not really, but might as well have been).  So out came the scissors (from the locked box in the nurses’ room) and I open the box (after wrestling the scissors off the nurse who REALLY did not want me to have them!  (Honestly ma’am, I DO know how to use them safely!J), expecting to find a tiny package with loads of “chips”………..only to find ANOTHER box inside.  Even more curious, I opened this one and found????  Dozens of packs of Aberdeen Angus Steak flavoured CRISPS!!!!  HUH?  Then my mind immediately flipped back to a conversation we’d had a couple of weeks ago about my badly wanting a nice, juicy steak so Margarita, unable to send me an actual Angus cow (Royal Mail refuse to ship livestock apparently – who’da guessed?), sent me the next best thing!  A HUGE thank you to both Margarita and Jeannie for their amazing thoughtfulness and generosity!! XXXXX

And so the day ends with Leoni and I sat in the dining room, she waiting patiently for me to finish this lengthy journal entry so we can finish watching an hilarious YouTube video of a comedian (AlohaFluffy) and me with sunburn and a painful shoulder……………..oh yes, sorry, forgot to tell you I went sunbathing this afternoon out on a garden bench with cuppa in hand and 2 kneeling pads for a headrest…………ah bliss. J

See you all soon lovely FNDers.............. HUGZ XX

P.S. I’ve just been reminded, I also had peas for lunch………….. J

The Lishman Journal – Days 40-45

Before I start, please may I say……………..HAPPY VALENTINE’S DAY To………………………… J

Sunday brought me visitors in the shape of my sisters and mother, so lovely to all be together, an all together very rare occurrence these days.  But I have jumped forward.  Sunday morning is washing day.  So after remembering the washing machine controls (although nearly forgetting the powder!), in went my clothes and then I turned to the tumble drier………….horror, remembered it doesn’t work now the repairman has been!!!!  They removed the door latch so we can’t even jam it shut now and use it……….thanks sooooo much Mr White Van Man!  So had to persuade one of the staff to go upstairs and borrow/use theirs, but get them back again before the inmates took a fancy to them…….

It has been quite a week here at the Lishman. Strangely enough it all started on Monday…………The day dawned bright and early, too darned early.  WARD ROUND DAY and my Half Term Assessment (yes, it has been 6 weeks already!).  Feeling like a school boy outside the head master’s study all morning awaiting “the call” and eventually was “invited in” at 11:40.  Imagine if you will, about 12 people (the whole multi-disciplinary team), sat around in a circle ALL looking at you………quite daunting but soon settle in and concentrate on the Consultant who directs the meeting and basically you have a 1:1, just with others looking on.  So all in all, not too bad and got all the way through with NO seizures.  Wonderful time!

Tuesday came all too soon BUT, lunchtime brought a real treat!  Leoni, David T and Elsa were baking PIZZAS all morning and brought up 6 plates groaning with the most delicious varieties for us to tuck into.  DEEEEELICIOUS!!!!!  And then an equally lovely treat, Laura Cordell and hubby came to visit after her assessment for the Lishman waiting list. (She's ON IT!).  What a wonderful visit! And my heartfelt thanks for the parcel of goodies she brought me!!!!  I was speechless then and I still am.  Too much to list here, they must have been a stone lighter on the way home!  THANK YOU LAURA!!!

And then came minor disaster……….Leoni was whisked off to A&E once more, this time for a fetching black and white photo of her rather full colon……….enough of that though, it’s dinner time somewhere or other!J.  An unfortunate side-effect of morphine, so now she has to come off that and hope to control her pain with alternativesL.  Good luck and I’m certain we’ll find a private supplier in Camberwell somewhere! ;-)

Wednesday was CRAZY DAY.  The lunchtime session with the Nail Bar saw me

fall into a “mad moment” and I succumbed to her charm, a hand massage and………(see photo)J.
   Wii Olympics evening was a really doozy.  THREE hour marathon with the combatants Leoni, 2 Daves, Annie and an audience of 1 (me); of laughs and spills, arms flying, skydiving off a table, golf clubs swinging and nearly taking heads off, swishing past ears, certain young ladies showing skills with swords whom I certainly would not wish to meet in a lonely alley on a dark night, wakeboarding to cool off, then table tennis in the tropical sun…….oh and the most entertaining language! J

Thursday was FRANCIS KING day.  But firstly I waited to see how many came out in the morning with arms hanging off after the previous evening's antics………………remarkably NONE!  Totally amazed but it turned out to be ME that suffered.  At 2am I had been woken up by my left arm shouting VERY loudly at me.  Having gone to the office looking for pain meds, I awoke some time later in bed after apparently collapsing outside the office and having one of my series of seizures.  Wasn’t a happy bunny at breakfastL.  And then Francis came for his follow-up with our therapist, Rosa, plus a meeting regarding his complaint about the food issues here.  Coincidentally(?) or not, we now have a new housekeeper who started Monday and a new way of food ordering where WE get to choose from the whole available menu as from next week.  Not ideal ordering a week in advance for those who want/need visual stimulus to decide, but much better choice for all concerned.  THANK YOU FRANCIS!

Thursday afternoon, the Wednesday “Fate Karma” took effect.  I was due to have physio on Wednesday but she had been unable to see me so postponed until Thursday.  And so the healing hands of a most amazingly fabulous physio were available to heal my shoulder pain just when I needed it.  Don’t know HOW she does what she does, but by golly it sure WORKS WELL!  Pain free in about 20 minutes!

Our weekly Community Meeting was a great one as the Ward Manager attended and we ended the hour hopeful of REAL change for the better now (possibly even a HOT BREAKFAST at weekends??????? Maybe!) J

Annie went home for her (very) long weekend so we were a tad subdued until Leoni decided to find Eddie Murphy doing his “stand-up” comedy on her iPad and the whole dining room was soon a-wash with floods of tears, laughing at the antics and my ears burned bright red at the language……………………honestly they DID!!

And so today, my therapy went well and I am delving deeper into my emotions that need sorting out and recognizing.  Whether they caused my FND or not, the CBT really DOES help deal with issues I’ve had for a long time and to look at them coolly and calmly with a professional guide leading the way.  We have also been able to persuade our therapist to hold an FND Group session next week.  This could be really interesting….or a total disaster, we shall see!!!  And then she is going on a 2 week holiday in March to re-charge and dump all our crap in the ocean! J

Oh and I forgot, Thursday’s lunch was just THE BEST meal EVER!!  Steak pie just stuffed with large diced chunks of the tastiest beef, followed by the most delicious syrup sponge pudding and custard (although to be fair, it tasted more like lemon sponge to most of us).  We all thought for an hour we had been transferred to the Ritz.

And so, up to the present.  Leoni and I sit, alone in the dining room, 1 lady having been discharged yesterday, one gone home for the weekend, Annie snuggled up at home with her little ’un, both Daves swapping Valentines something or others with their other halves at home also and the only others here holed up either in their rooms or the TV room.  1 hour to supper and then bed beckons with open arms……………….so tired again despite my little power nap before dinner.  How did I ever work????

Weekend a-coming, hope you all are looking forward to something special and we’ll meet again soon  HUGZ XX  and one last HAPPY VALENTINE'S DAY to one and all XX



P.S. LEONI HAS NOW BEEN!!!!!!!!!!!!!!!! :-)
Yay Leoni!!!!!

The Lishman Journal – Day 39

And so we are half way through the weekend again.  Very few of us here, both Dave’s gone home and 3 of the ladies also.  

Lovely Annie was held until Thursday before being allowed to escape after her 8 days of Telemetry, but I must say it was a good thing because she was in a frame of mind on Monday and Tuesday where I feel she might not have come back. We all so hope it gives her consultant the necessary information to progress her treatment and help provide the right pathway for her.  Her skin and hair have suffered and I think she was heading for the longest soak ever recorded in a bath full of scents and moisturisers!

My Thursday shopping trip was cancelled due to rain.  Instead I spent a lovely hour drinking Earl Grey tea and sorting through hospital cameras with my lovely OT!  Picked out a nice Canon 400D DSLR to play around with and had high hopes to rediscover my photographic bent (hush now, none of that!)………….then found the Compact Flash memory card was missing and there is no internal memory!  So turned my newfound technical capabilities to getting the ward printer working again, as I came across the correct lead, only to find the ink cartridges are empty and dry, only one computer operates and it is the one WITHOUT internet access!  Methinks it has been a long, long time since anything worked around here! Am hopeful of buying replacements for all three items next week when the OT comes back in and can use the Ward Debit Card and have been promised she'll chase the hospital IT department to supply the replacement computers, apparently promised many moons ago! J 

My dearest Leoni is in constant discomfort owing to a severe lack of bowel movement, due no doubt to the morphine she needs to live on (to say nothing of the food issues). Despite days of all the usual medications to assist, nothing worked and so arose the spectre of the dreaded ENEMA.  We, of course, helped minimise the drama of such an occurrence (honestly, we DID!!!), but to her great relief pessaries were prescribed instead, with a proviso that if 5 days does not produce the desired results, the E word would come back to haunt her.  I reckon, even if the pessaries do not work entirely, the spectre of what is to come will SCARE the s*** out of her on that last day!!! J

I have to report, with great pleasure, a first…..NO SEIZURES today!!!  Nearly went off on one during dinner when an alarm going off combined with noise, lights and certain annoying personal habits (not going into detail!), but managed to remain “in the room” and it’s passed again.  Fingers crossed I can manage through until bedtime.

My Saturday morning started poorly due to being awoken by what my brain, incorporating it into a dream, told me was a vibrator (please don't ask why!!!)……………turned out to be Ed using his newly acquired electric razor!!!  I dozed a while, then thought groggily, “Hmmmm, where’s my morning dose of Loperamide”?  Decided to rouse myself, got up and checked the time…………8:15!!!!  Well past breakfast and no call for that either.  Stumbled into the dining room propping my eyelids open to find 2 others also looking bewildered as there was no toast or tea.  It was 8:30 before things started moving and I had my usual single piece of toast with marmalade as there was no alternative beans or spaghetti (yes, honestly, that IS the norm here!)……………………..08:45, nurse comes up and says “oh, would you like some scrambled egg before it’s thrown away”?  Errrmmm, excuse me, scrambled egg??!!!  Bit b***** late to offer now!  What a waste, yet again, all thrown into a plastic sack and dumped!  Is it REALLY so hard to tell us what’s on the menu??? (Apparently yes it IS) L

I think that perhaps, as I get more cognitive function back, the niggles become greater as I realize what is going on.  I also know I have to stop those same niggles from overwhelming my emotional status and becoming the Himalayas!  Just so very, very hard to do!  Persevere I hear you all say, and persevere I shall, even if I do have a few strops along the way J

Here’s hoping you all have lovely a Saturday (or Sunday for you Antipodeans).  HUGZ x

 

The Lishman Journal – Day 36

Well good evening one and all.  My Monday was quite full but the afternoon proved to be rather annoying.  We had all been asked to attend a Community Meeting both on Monday and on the usual Thursday.  Told this was a new unit request and that please would we all attend at 4pm, I moved my physio appointment  especially.  So I’m sat in the dining room at 3:50, armed with my notebook and pen, primed by Francis’ previous attempts at raising and resolving patient issues.  I was still sat there alone at 4:15 and so went in search of a staff member to enquire as to the delay.  Well, long story short, the meeting never happened!  It was blamed on one person who in fact it was not, but I eagerly await Thursday now to see what occurs!! 
But now the clouds have lifted and the reason becomes clear……………..I’ve found out it’s a Care Quality Commission requirement!!!!  So the box is ticked??

David(2) returned  from his jaunt to A&E at 11:30pm sporting a rather fetching blue wrist support splint and a headache, but managed to be smiling at breakfast :-)

Don’t think I told you this, but a few days ago our plastic bag bin-liners were removed in the unit bedrooms, apparently because someone had “misused” one……………..???  Well today I walked into my room after the cleaner had been and found NO bin at all!!!!  Yes folks, we must be truly unsafe because now the unlined metal bin has been classified a bacteriological hazard (no kidding!) and apparently we are awaiting delivery of BROWN PAPER BAGS!!!  Quite what we do with our garbage meanwhile I have no idea………….

Tuesday evening was a rather special one.  Whilst Leoni is rather under the weather, it fell upon Annie, David(2) and I to enter the Wii Olympics!  So after dinner (a delicious chicken brown stew which needless to say I did NOT have, sticking to egg mayonnaise and rice salad), the three of us retired to the Wii Blue Room (or Conference room, with wonderful air conditioning) and went 10-pin bowling!!  Technically challenged these days, particularly in the art of Wii games machines, we eventually managed to get the second controller to operate and played a few reasonable games, amid raucous laughter and very heightened emotions!  A Wii bit of Golf and Tennis followed, but I think by then either the enthusiasm or our attention span waned and it was all put away for the night well before supper!J

My treatment for today consisted of half an hour (she was late) of physio exploring my back problems and a half hour CBT session exploring my mind problems, or rather, searching for some, as we still have not discovered the nasty little traumas that may have conspired to put me here!  These sessions have been split as I couldn’t manage a full hour each time, having previously wasted much of the last half hour of them in seizure or “treacle” mode.  Next on the agenda, after “Mindfulness” is to come a little bit of Meditation……………intrigued as I tend to spend half the day staring out of the dining room window at the building works going on with not a thought in my head J

I didn’t have chance to post this last night, so Wednesday has now been and almost gone.  I sit in the dining room eating tomato soup, following a supper of 3 slices of toast and jam.  I hasten to add the soup was very much an afterthought due to it being made especially for another patient who then promptly refused it.  Waste not want not…………….but my digestion might protest a little later!!!

A mixed day today. Was used as a guinea pig to train another 2 student doctors, well 3 years apparently………..do you think the staff send them my way because my extensive medical history and way of meandering through it bores the pants off them???? J  (not literally of course, they were nice young lady doctors-to-be) J

David(2) decided he like Kings A&E sooooo much he gave the floor a big big hug this morning and spent 4 hours looking for the TV cameras…………………back for lunch sporting a sling and promise of yet another outing tomorrow to be casted for a broken hand!  (What patients will do to get outta here!!) J

My physio session proved interesting as she found my right ankle quite swollen again, well they both are, but as usual the right is worst presumably due to the damage done by the DVT.  Remember being warned about possible future issues…………….looks like I’ll have to resurrect the TEDs!!!!  (wonder where I put them – sock drawer?).

Looking forward to tomorrow as I’ve been promised a Shopping Trip!!!!!  Wheelchair at the ready and cast a pray to the weather gods for no rain because this guy has NO raincoat/jacket/waterproof!!!!  In need of supplies and maybe even a new shirt..............

See you all soon my lovely family of FNDHope’rs

The Lishman Journal – Day 34

Well dear readers, another weekend has been and gone.  It was fairly quiet as is usual in any hospital, except for a couple of notable exceptions.  Leoni decided to liven up proceedings on Saturday by having a couple of seizures whilst sliding under the table.  This lead to a somewhat poor initial response by the staff member and I intervened to ease her discomfort.  This has now been resolved, hopefully satisfactorily by a little bit of “further education” (and a very irate and caring mum on Sunday)J.  Thankfully this is a rare occurrence and more an individual’s issue than a general one.  So a poorly Leoni was pampered and loved by mum on Sunday and was getting over things when she realized how painful her toe was getting.  Now this goes back a few weeks to when she caught her dropped iPad using her big toe, (obviously better to catch it than it getting damaged hitting the hard floor, don’t you think?).  One blackened toenail was then stood upon by a nurse helping her up after her seizure, thus damaging the nail a little more.  Her toe is now somewhat battered and bruised and after asking for a bandage to protect it, instead was whisked off to A&E (just over the road in Kings) whereupon it was declared a danger zone due to infection!  She now has 4 horse-sized pills to take daily! NOT a happy little LeoniJ; but a big white padded dressing shows of her foot delightfully.

An unfortunate weekend also for Annie, who had to stay connected to her 23 or so wires until this morning and is suffering from lack of showers, (ladies at least will be fully away of what 8 days without one makes one feel like) and uncomfortable areas of skin where the sensors were detached using nail polish remover! A long hot shower and luxurious hair wash await methinks!  Back home to see little one soon too J.

I’m sure there was other notable happenings also, but my memory has failed me totally and no-one else in here has a better one! J

With 3 patients home for the weekend, Sunday was a day of relative calm and surprisingly decent food!!!  We even had roast turkey, stuffing, roasties and Yorkshire pudding (YES Yorkshire pudding!).  Apparently that is the done thing now, but I come from an era when they went only with roast beef!

And so Monday dawned bright and early……………unfortunately my back has become very painful after the 6 tummy strengthening exercises I did last week with my physio, (well, can’t think of any other reason!)

We have 2 new members to our community arrived today.  One, another David(2), has taken over the room vacated by Francis and a lady we have yet to see.  Unfortunately David(2) has already made an impact he would rather not have……..on the door, by falling and belting it with his head, so is currently over in A&E already, not 10 hours in to his stay!  Could be a regular feature apparently as he too has FND with non-epileptic seizures, only he has been known to go walk-about during one!!!

AHAH, just been reminded, Sunday tends to be a laundry day and this Sunday we ran out of washing powder!!!!!  In actual fact, it must have run out before because I was first in there and the box was empty.  After a fruitless search through store cupboards by the staff, I ended up scrapping the dried up stuff from the bottom and combining it with what had been left congealed in the tray!  Sounds rough, but I did get clean clothes! J.  It took a trip to the local store to buy a small box to tide the unit over until more stock can be ordered.  Talking of stock though, our lovely kitchen lady Linda, went through her stock today and threw out FOUR BOXES of out of date HP sauce sachets!!!!  And yet we can’t have a cooked breakfast, even once at a weekend because of the cost.  Hmmmmm, definitely one for the Community Meeting……………which didn’t take place today, despite us being urged to attend as it was the first to be held on a Monday, because no-one knew who had actually organised for it to be held!!!!  The person it was thought to be was already engaged in a regular “goal setting” meeting.  And so the mystery thickens, yet I shall not let it rest as I postponed my physio session especially to attend it!!! J

Tomorrow holds interest as I am due my postponed physio session, followed immediately by CBT!  And all before lunch J.  Wednesday shall bring my Nail Bar attendance, more to come on that J.

We are sitting here waiting for our supper of toast and tea, whinging and whining as usual……………fairly certain now this is part of our therapy where we dump all the niggly aggravations and exasperations on each other and get them out of our system?

So clattering in the kitchen heralds supper is a-coming and time to post this diatribe.

Here’s hoping you’ve all had a reasonable day, (if you haven't please don't bother moaning to me coz you'll get no sympathy here tonight, my back is too painful!) :-) 

Seize ya all soon folks XX