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