Hospital Bound Once More

Here we go again...

I am currently writing from my hospital bed on the Respiratory Bay of Ward 23, Royal Preston Hospital, what can I say about being a patient except that you have to be just that; patient! Beyond belief to be honest...

In the Resuscitation Bay of Royal Preston Hospital on Friday

Being An Advocate

I am starting to realize the importance of being an 'Active Advocate' for my own Rare Disease, Melkersson Rosenthal Syndrome (MRS), with 27-years of first hand experience who is better placed to know what works for me and what doesn't? Of course I don't know of a cure, if I did I wouldn't be here, I can't keep my illness under control with the medications I have at home already, because if I could then again... I wouldn't be here!

So why, then, do they always ask the same question with regards to giving me IV medications? Be that; "But you aren't on IV Morphine at home for pain are you?" 

     "No, at home I am on 75mg Fentanyl Patches, which are changed every 72 hours, I take regular Paracetamol and Oxynorm 20ml as and when required. If they were sufficient for the pain I am currently experiencing do you honestly think I would put myself through another hospital admission?"

Does anyone else face this problem?

I also came across the dreaded 'Google Doctor' again, basically a Doctor who previously to meeting me had never before heard of MRS, then of course off he trots to google the disease and comes back arguing with my 27-years experience and my devoted partner/carers almost 9-years experience, the combative stance? facialpalsyUK's definition of the illness, which is severely lacking, outdated and incomplete.

He quoted the website verbatim, it was cringe-worthy for both myself and Amy, even his own Junior Doctor, who had spent the time listening to us and absorbing what we were saying, and had also met us previously, was shuffling his feet awkwardly and averting his eyes at particularly 'difficult' moments when the atmosphere dropped beyond zero and we clashed yet again in a head-to-head battle of wits.

The Outcome

So in the end the junior doctor won out, we won out but not before expending needless energy and struggling with anxiety and stress that exasperated my symptoms and then today the same thing defending my treatment plan to the nurse in charge of the Bay for today. 

Sometimes it doesn't matter how nicely someone says something when what they are trying to say is that they disagree fundamentally with something that is helping you. That they want to change it for their own reasons with no relevant background knowledge of your illness to something you know will extend your hospital stay by twice or even three times as long!

She advised me that she would be speaking to the doctor about changing my IVs to Oral medications, as the on call doctor would be completely unfamiliar with me and my rare disease I knew this could spell disaster, that I could end up stuck in hospital, backtracking and in agony for weeks...

Get some guts...

My veins, My cannula, My body, My Rare Disease; Please just make me better rather than argue with me...

So I puffed out my chest, mentally speaking, picked my guts up off the floor, and remembered what Amy said to me; 'don't back down, make them listen, they don't know MRS, they don't know it like you and I do, they don't know you. Do not let them change anything on your drug chart or care plan without letting me (as in her) know first."

So I said that I would want to speak to a doctor prior to any changes being made to my drug chart and that I was an advocate for my own rare disease etc etc. well it had the desired effect, I did feel again the unnecessary confrontation, which let's face it is really not needed. 

I am on a Respiratory Ward, I know I am not the average patient that comes here, I am not what they expect on a Sunday morning... So leave it to the doctors and myself to discuss my care and come up with a suitable plan of action, why try and interfere with that very delicate balance that was clearly having some kind of positive effect?

I have spoken and dealt with this all day since and as she pointed out during one of our conversations, we are all normal people outside of this hospital, with normal lives, and we have no real concept of what is happening in those 'normal lives' that each other are living. 

...So in essence, although she did not say this herself, she could very well be bringing a little of her home stresses to work, and who is not guilty of that at some point in their lives.

On-Call Doctor

Eventually a young on call doctor did happen by, but luckily by this time Amy was here, and she spoke up on my behalf, explained the illness and how we were worried that the medications and treatment plan might be altered too soon and I would end up back to square one. 

The young lady doctor was very understanding about this and explained that she had no intention of changing anything as it would clearly not be the right course of action at this stage, as altering a method that had only just started to work was detrimental to my care. Finally someone gets it!

Perhaps I'm Overtired?

Last night I was so damn tired; but this being the place that it is things happen, not such wonderful things, sad things, things that take you on a mental journey to a place you do NOT want to re-visit! 

So there I was back in that place where my heart starts to break all over again while listening to the very audible sound of another family's collective hearts crumbling as they said goodbye to their loved one.

You can't switch off from that, no matter how much you might want to and even if you could it feels kind of insensitive to try. To pop in a pair of earplugs and know that you will be snoring away, singing a background tune to their grief that is completely unsuitable. 

So no, I sat awake on my Ipad in a lot of pain but not wanting to ask for painkillers because it seemed again like an intrusion on their grief to start asking for something so ordinary and mundane as pain relief when they were visiting a section of their own personal Hell.

Waiting for the appropriate moment to catch a nurse when she is not busy with a grieving relative or crying herself is not a task that I would recommend. I don't know how they do this job... 

Sometimes I might get upset and annoyed when I am not treated the way I would hope by some, but at times they do really shine, admittedly some more than others, but even so... I couldn't do their job.

My bed for the night; I am hoping that tonight I might actually manage a few hours sleep in it...

Made An Impression

A few years ago I was a patient on this same ward, different bay, and again there was a very sick lady in the bay with me. She was rude and aggressive leading up to the days when she began succumbing to her illness. Not just to the nurses and doctors but to the other patients as well, and no I wasn't spared...

The only time I saw that woman smile was when her family visited, then she changed completely, her face relaxed, she became polite and gentle... A much nicer version of the person we were met with the rest of the time. 

Not to be cruel but she smelt to high heaven, I have never before smelt anything like it, she kept insisting on enemas that apparently she didn't need but could somehow talk her way into receiving anyway... And usually just in time for dinner too... :-(

What happened next...

... Then one night she took a turn for the worse, it wasn't really expected as suddenly as it happened as far as I was concerned anyway, it was shocking, suddenly I was awoken in the night to a lot of commotion around her bedside... then it went quiet.

The lady in the bed opposite me, who I had become friends with, text me and said that she thought that the lady beside me must have passed away. But then no sooner had I opened the message then we heard the nurses talking to her.

"Now... sweetheart, we are just going to roll you, we'll get you all nice and cleaned up **name omitted** don't you worry..." and so it went, the lady opposite and myself were very confused. The other lady in the bay was peacefully asleep and completely unaware.

Then one of the two nurses popped her head around my curtain, ours had all been drawn during the commotion, she asked me if I was okay and explained that the lady had sadly passed away.

Now I have known these two nurses for a number or years since then, back then I didn't know them too well, as at that point my illness was just getting it's 'nasty little grip' on me. Anyway it transpired that despite all the mean jibes and nasty comments, the biting, pinching and punching... yes all of that happened and to those nurses too...

... When it came to it, they showed that lady the most beautiful respect, when her family arrived, teary and sad, crying uncontrollably, I could hear but could not see. I heard the nurses give them respect and patience too, offer a comforting shoulder to cry on, give them the peace and space they needed to say their goodbyes.

During all that followed that family were not made aware of the special, or more likely typically respectful, manner in which those two nurses treated their mother, I wish I could have told them, because I only hope that my loved ones who have passed were treated so kindly.

It wasn't done for a pat on the back, or a well done, it was completely altruistic, there was nothing in it for them other than knowing that they had done the right thing by a very poorly lady who had passed on in their care. That night has always stayed with me and probably always will.

I have no end of respect for those two nurses and all the nurses like them, they are what 'being a nurse' should be about. It was a beautifully sad event to witness and in some strange way I am glad that I was there to listen in, to know that there really is goodness in the world, beating in the hearts of all the nurses who nurse because they genuinely care.

"I see the bigger picture, sometimes my lens is just cloudy"

I do see things as they are, sometimes I do get bogged down with the negative, who doesn't when they are always poorly and faced with people who simply wont listen, when their voices are not heard or heard but valued?

I challenge anyone not to feel that way at times when suffering with a rare and debilitating disease, especially one that causes chronic facial and body pain. Amy sees it every single day, she understands, she wants me at home, of course she does and I want to be home with her... 

So why would anyone imagine that we would prolong this agonizing separation? Why would they believe that being dosed up to the eyeballs on medicines that mean I have to stay here while on them was a plausible choice made by the both of us? The lovely free hospital meals? The great TV you don't get? haha

Being in hospital is a means to an end, the end of my current spate of unlivable flare-ups, that have been happening back-to-back. I have been enduring as much pain and 'zoning out' as I possibly can, but enough is enough and we decided the only way forward was to step sideways for a little while and come here.

Sometimes if you take a little detour you get to miss the excruciating bumper-to-bumper traffic jams, avoid the head-on collision or the 10-car pile-up, you take a sideways trip for a few days and you arrive at your destination a little later than planned but alive and a little better for it. 

'Zoning Out' Vs Seizures?

It has never occurred to Amy or myself previously that what I could be experiencing when I describe my 'Zoning Out' episodes could be seizures. Perhaps because like most people when we imagined seizures we pictured someone laid helpless on the floor suffering a severe Epileptic Fit.

However just the other day someone on a Rare Disease Support Group I have joined stated that mine and Amy's combined descriptions of my episodes sounded ominously like I could be suffering some type of seizures.

Well to have a possible answer, finally, after years of telling every doctor, nurse, medical personnel that we have come across about them, sounded like music to our ears. Admittedly probably the kind of music that would be fitting of a slow-build horror scene on some old Hitchcock Horror but nonetheless, we were intrigued.

So research, research, research... Brought me to varying types of seizures that all had similarities to my episodes, such as Temporal Lobe Epilepsy (TLEs) which combined the three most obvious candidates, due to their effects: 

• Sensory Seizures - Because I hear and see things that aren't there. 
• Autonomic Seizures - Because I suffer an extremely unpleasant sensation in both my head and chest.
• Psychic Seizures - Because I have garbled speech, problems with memory and get overwhelmed by sudden emotions such as utter dread.

There are so many different types of seizures that it really is overwhelming to a layman like myself, I am not going to pretend that I know much about them because when it comes to seizures I truly am a novice.

However it does upset and somewhat infuriate me that no one has EVER looked into what these episodes mean and that they can cause long lasting damage and even death if left untreated!

Perhaps it's not that, maybe it simply is a part of my MRS but shouldn't that be investigated anyway, should the 'route-cause'not still be identified if at all possible? Well we are going to start keeping a 'Seizure Report' that stipulates everything worthwhile and useful with regards to these 'episodes of unknown origin and/or pathology' we will get to the bottom of it even when the only way is to present our findings to the doctors ourselves.

In order for the relevant scans to show any Seizure Activity they would need to be undertaken 'during' the episode, seen as we can't get anyone to actually run a scan at all this seems like an impossible task and not likely to come to fruition despite all our best intentions.

So go Team Christie & Amy once more.

I have penned a letter of intent, along with Amy, to send to my Chest Physician, Dr Vyas, all our GPs, and any relevant specialist working for the Royal Preston Hospital, highlighting all my symptoms and any specific elements that may be of a particular interest to them with regards to their specialties and research interests.

The letter stipulates that we are writing to advise that we are looking to advance the current knowledge of MRS and to create a Charitable Foundation for it, that we are looking for a person(s) within the medical field who will be willing to step forward, take an interest and become somewhat of a 'Clinical Advocate/Point of Contact for the disease. 

The letter goes into a fair amount of detail and I have tailored each one to suit the relevant party while using my first penned copy as a general template, who knows if this will get us anywhere but we are at a stand-still without it. We can only try...

I have also been looking to join any current Rare Disease Foundations possible as well, in the interim, these will offer insight and knowledge and could open doors for our own MRS Charitable Foundation in the near future.

We want to help more people than just myself, yes of course I want to be benefited, I want to be cured or treated to the best extent of medical capabilities and beyond. 

At the same time, however, every time an image of a child starting with this awful illness pops up on the MRS Support Group Facebook site etc. it is heartbreaking, we do not want anyone else to suffer the way that I have... we don't want to give this cruel disease that chance...