Sunday, 6 August 2017

All Good Things?

Hello dear readers!

Yes, it’s that time again! Time for yours truly to afford you, my dear readers jut a peek into this thing I call my life.

With Spina Bifida and Pernicious Anaemia, running alongside the all new Chiari Malformation, and Multiple Sclerosis (see here), these are interesting times to say the least and the near future is burgeoning with the promise of more medical appointments than you could safely shake a long brown sticky thing at.

So what, you may ask, has been happening since we last spoke? Well truth be told… not a lot.

Slow News Days
In fact, since my escape from hospital some seventeen days ago it has been a case of no news being, well, no news.

We were told on that fateful day, less than twenty four hours after receiving the MS diagnosis, that we would be hearing from a specialist and an MS nurse within the next three weeks. Now it may just be me, but by this I understood that I would be seeing these eminent medical professionals in that time scale. I was of course, wrong.

In fact, as the time ticked by and both myself and my sainted wife, Tina, became more and more impatient and this got to the point of Wednesday seeing me take the front foot (so to speak), and pick the phone up to speak to the specialist’s secretary

The Holiday Blues
I was pleasantly surprised to find that any misgivings regarding the type of person on the other end of the phone were unfounded. The lady in question was helpful, considerate, and sympathetic. We had heard nothing so far because Professor Al-Din was in the process of changing his clinic times. In a perfect storm of hold ups, he was also just about to go on vacation for a couple of weeks, meaning the earliest appointment.we could be pencilled in for would be he 31st of August. Trust me to get diagnosed with a life limiting illness at the height of holiday season!

Still there was one other possibility to latch on to. One further door that might be opened with the judicious use of a little gentle pushing, or failing that a swift kick to the hinges, and that was the MS nurse.

A Man Of Letters
To be honest I’m still not entirely sure what the exact function of the nurse is. The specialist, we are told, will be able to answer the questions that are burning hot enough in my mind to leave a permanent imprint and possibly fall out of my left ear in a molten mess, but the nurse may possibly look at more practical matters and in turn get us referred to such luminaries as an Occupational Therapist. The nurse may also be the one to suggest and follow up with any medical regimes I may be put on. As I say, I’m not one hundred percent sure. What I do know is that the nurse or nurses in question were busy on the wards at the time of enquiry and that the promised call back turned into what I can only describe as a holding letter. A promise of an appointment is hinted at but there is nothing concrete as of yet.

A similar letter has arrived in regard to speech therapy. No, I’m not slurring my words. I haven’t developed a stammer or a lisp but, curiously, according to the odd person, including Tina (who isn’t all that odd), the volume at which I speak has dropped. I’m also, on occasion, finding that I have to think about what I’m saying a little more than I’m used to. The words are still there but it’s almost like my brain just has to take a second to organise them into coherent thoughts. It may take a little while to find out if anything can be done about this as, once again that letter, although accompanied by a lovely little hand written note, was of the holding variety.

A Game For  All The Family
So that is where I’m at. I have popped into work who are being just fantastic and are looking into a range of possibilities to make my day to day role that much more tenable as well as agreeing that I can remain off work, with no penalty other than the spectre of Statutory Sick pay, until at least the 31st. Apart from that it’s a waiting game. Not one that either myself, or Tina are ideally suited for.

In a perfect world the appointments would have been flooding in right now (well, in a perfect world I wouldn’t have MS, but you know what I mean). I wouldn’t be stuck kicking my metaphorical heels at home. Getting where I need to go wouldn’t be left to the tender mercies of the public transport system and the lovely people who insist on sitting at opposite ends of a bus, but still carrying on a loud, emotional, and enthusiastic conversation (for my part, I thought I remained remarkably calm). It is a time of much frustration where nothing seems to be happening with much speed.

I suppose from the medical team’s point of view I have been diagnosed and, although not symptom free, there's not a huge chance of me keeling over tomorrow (hopefully), so with the massive underfunding of our beloved NHS a little delay is probably unavoidable. After all I’m sure there are many more advanced and serious cases than my own to deal with. Unfortunately, the thought does little to dissipate my impatience or my frustration.

Self Help
We got warned, when being discharged from hospital not to consult Dr Google. Much horrors, expensive quack therapies, and anecdotes will be found there,we were told. As time goes by that temptation is becoming harder to resist. My mind keeps turning to possible measures I can put in place myself. Could I improve my diet? Could exercise be of use? Is there anything I can buy over the counter to alleviate my symptoms? I know of one much vaunted therapy which might prove useful further down the line, involving certain herbal cigarettes or, um, cookies... but again I have not done any real research on this and to be honest I wouldn’t have the first clue as to obtaining or using it, having lived a sin free and sheltered existence (not that I would of course)

So, I guess I’ll remain a good boy and let my magnificent mother do all the online stuff (like I can stop her!). I will just have to come to peace with the waiting game and hopefully not get too many claw marks on the wall. Time, as always, will tell.

Until next time...