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

The Lishman Journal – Day 31

And so another Friday comes to The Lishman.  It has been a week of trials and tribulations, tinged with a mixture of sadness, yet happiness today. 

Our dear friend and fellow FNDer, Francis King was discharged today, returning home to Family and Friends after 5 months within the Lishman Family.  A much changed and renewed Francis by all accounts; a more mellow, balanced and functioning (as opposed to “functional”) person, one whom can now go forth and experience renewed relationships with his family, enjoy new experiences with his independence and discover a new pathway through life, full of fun and exuberance (and running up along the foreshore as the trains chase him along the track?) J  He will be sorely missed and has left a large hole in the group here, (not meant as a reflection upon his physical stature, purely his personality........honestly!).  We shall have to regroup and reform, perhaps with Steve joining us a little?…………….Many, many good wishes and hopes for a very bright and enjoyable future Francis!  We shall not forget!!!!

On a similarly sad note, poor Annie has been cooped up in her room for the last 5 days as she is having an extended VEEG, wired up to a recorder with 28+ wires attached to her personage!  She was due to stop this afternoon and be able to go home to her little one and hubby, but due to a little glitch yesterday where the recording stopped, undiscovered for a few hours, she’s being left attached all weekend.  Mind numbingly boring I’m sure, but Leoni pops in often to cheer her up and we all “FaceTime”(this new-fangled technology and terminology is beyond me!!!) each evening  for a virtual supper together!  (Us men being not allowed into the ladies’ corridor, we cannot visit :-( !!!)

My week has been spent somewhat under a cloud.  I had another collapse on Monday (I think it was?) evening after supper, longer series of seizures this time on the floor and then started a headache on Wednesday morning about 1am that stubbornly refused to budge, despite a 4-hourly bombardment of codeine and paracetamol.  Being very light and noise sensitive I stayed in bed with the curtains closed, although numerous nursing staff tried their best to wind me up by turning lights on and trying to open curtains, asking me to join the rest of the group!!……………wish they’d speak to each other more and pass information on!!! Eventually around 3pm I went into a series of seizures lasting about 30 minutes and then fell asleep/comatose, but awoke 20 minutes later headache-free!!! J  Is that weird or what??? 

I am finding more and more obviously that my “fuzzy” periods and “mini” seizures lead up over a few days to a larger series that then seems to clear my brain and let me function more normally for a few hours.  It does highlight also the need for sufficient sleep/rest to counteract the stimuli of living.

Today we went on a trip to the hospital restaurant to mark Francis’ leaving, discuss a project he has been working diligently on for the good of patients yet to come to the unit, (“Oxford Comma”!!J) and enjoy some fresh air and different surroundings.  4 patients (2 in wheelchairs) and an OT went and we bumped into another patient, Ed(ward) and his OT there so we had quite a party with camomile tea, coffee and hot chocolates all ’round.  Unfortunately I found the noise and LED lighting all too much after a few minutes and scared the **** out of some around the table by putting my anti-tip wheels to a very strenuous test! J.  However I and all the others enjoyed a laugh and the great company.  Hopefully many more to come. (Plus they have a great menu apparently, sooooo much better than the narrow selection on the ward currently - more to come on this).

And so, here I sit at nearly midnight, Leoni and Ed playing cards, the TV blaring in the lounge and my eyes growing increasingly heavy, despite my 2 hour sleep this afternoon and another 2 hours this evening!   Well, perhaps I should refer to them as “restorative power naps”??? 

I hope this finds you all jogging along comfortably.  If it does not, then HUGZ to you and best wishes for a better day tomorrow.

Nighty night