Rhythm

I’ve now been aware of the fact I have this disease for a year and where have I got to?

If I had thought of making up a list of negatives and positives at the beginning of the year – even in the summer – it would have been impossible as the list would have been one long negative.  But I think I can offer more than negativity now having done my year of mourning for my old life.  Which is how I think of the past 12 months;  trying to come to terms with what I will never, ever do again and form some sort of acceptable reason for building a new life.  A new me.  I’m not sure I have begun to accept where I will end up (in a wheelchair) and being dependent on others for everything.  But with luck there will be a few years before I reach that point.  I do take my brother in law’s words to heart……carpe diem.  I am not in denial of how this disease will disable me but by not pandering to it I hope I can get some extra time.

The importance of pacing myself is paramount to a day’s existence.  I have been warned against overdoing it.  Well, that is impossible.  When the switch is flicked I simply cannot do whatever it was I was doing until the next day after a night’s rest and it is scary how weak I now am and the importance of getting as close as I can to whatever I am visiting is vital.  Otherwise I waste energy just getting there.  So spontaneity is a thing of the past.  I can surprise myself at what I can achieve if I plan it and I have no embarrassment in saying I cannot do something.  I have learned to feel a sense of achievement if I complete a tiny task, instead of feeling frustrated or pathetic.  If my existence is in a rhythm I can anticipate my needs and what I am able to do.  If something happens to break that rhythm it throws me.

What about pain relief?  Well……..I feel I have gone on about my agonies and serpents too much.  But to summarise:  When in California a rattlesnake joined the party but he was shaken off the stage when I had a relapse towards the end of our trip and he was completely scared off by the python and the cobra and and and.  I think I’ve worked out a rhythm as to when I have relapses, and at the same time have managed to reduce my painkillers considerably as suggested by the last consultant I saw.  I would love to be off them by Christmas, but I think it’s unlikely.  What I have learned is how crucial temperature is to my wellbeing.   If I’m too cold it is an invitation to any snake about.  Too hot and I find it really difficult to function.  The relapses occur at monthly intervals and last about 5-7 days.  I think I’ve been able to identify them as relapses because I’ve got the pain patterns sussed.   The CBD oil is vital and it works.  The oil with the THCs in is kept in a very safe place and I have yet to use it.  I don’t want to use it unless I really have to and also I want to experiment when we haven’t got people about.  Ever since our return from California we have had guests or something happening, and to be honest I’ve not needed it until the end of last week up until now.  So I’ve just had a rather wobbly few days and excruciating nights.   I hope it may be over by the end of the week which means I may get through Christmas without a relapse……let’s see.

Something that may interest you.  It is very very difficult to get the CBD oil with the THCs in (let’s call it legal Cannabis).  GP’s cannot prescribe it and I think my  consultant could but the NH one is nigh impossible to get hold of (I can’t even get an appointment) and the latest private one I have yet to try.  As I have it, I do not need to ask him.  I will ask him as a matter of interest, and report back.  All I’ve got to do is send him an email.  Let’s see.

When we were in California I thought I would try and obtain it, although I was not that worried as I was confident I could manage with my current cocktail of CBD Brothers purple edition and the low dose of Gabapentin.  So, when in Santa Barbara I tracked down a supplier who was just off the highway so we wouldn’t have been making a massive detour.  Having got inside the building which looked like a sort of ”light industrial unit” we were in a roomy reception area with nothing in it except lots of pictures and a counter with a very helpful, young lad and a locked door to his left by which was standing a big, burly man with a massive gun on his hip.  I explained I had MS, was on holiday, and would like some CBD oil.  “That’s fine”, the lad said “I just need your address so you can be referred”.  Well, as we were touring I didn’t have a US address but he said that wasn’t a problem, I could give a telephone number instead and for a fee I would be contacted by a doctor who could ‘prescribe’.  I had to enter my phone number into the text box which of course it wouldn’t accept as the configuration of numbers is different for European mobiles. They were incredibly kind and sorry they couldn’t help me but I had to accept I’d drawn a blank.  So off we went.  Whilst we were there a couple of people came in who were obviously known to the outfit.  Their goodies were brought out from beyond the locked door and they swiftly left.

I won’t be completely new:  my maths will still be crap,  I will still hate being cold.  I will continue to love colour and music.  But I can use it as an excuse when I mess up on a hand of bridge.  Or can’t remember what I cooked for supper last night.  Or the name of the film somebody recomended.  I wasn’t going to bother much about Christmas but now I want to do as much as I can.  Decorate as much as I can.  Cook as much as I can.  Shop spectacularly and entertain as much as possible.  So long as I plan it, I can do it.  I might not be able to do any of it next year.  

I have had a couple of weird things happening to my eyes which could be MS or maybe not.  The optic nerve is something in the line of sight of the disease and it now appears that may have been a sign of the disease taking hold, and labelled, to use the medics’ phraseology, a CIS (Clinically Isolated Syndrome).*

In layman’s terms  the first episode of neurological symptoms.  From what I can remember in 1985 I was just aware my sight was affected because of a blackness around the periphery of my vision.  Which lasted about 20 minutes or so, and I think it happened when I was hot.  In the past few weeks my eyes have just felt heavy, tired and a sharp pain inside my head.  Sorry – that is the only way I can explain it.

*i have explained all this already (13/9/2018) so I apologise for repeating myself.  See;  I can remember!

I’m publishing this post without a careful read through so apologies to you all if it’s all rubbish ………I’ve written it whilst in the tank with a paraplegic and his father.  The victim of a car smash.  He’s very young – 20 or so.  I have had a life.