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.