It’s 01:10 on 01/10/2017…I find myself sat in the armchair of our living room unable to sleep.
Recently life was beginning to make sense…I have been working very hard this year to formulate a sustainable plan for optimum work-life balance; making the move to do more of my passions as a profession where possible intermingled with bread and butter work.
As such, I have just set up a Forest School and my own Education & Private Audiology Practice…the Audiology feeds the Forest School. I have also been incredibly lucky and have obtained work with most probably one of THE most heart-warming and worthwhile projects I have ever had the pleasure of coming across; Surfability UK CIC; I have been helping Surfability to deliver training in inclusive and adaptive surfing to their surf instructors. As a side note, if you don’t know anything about them, you simply must watch this video – I challenge you NOT to shed a tear 😉
Anyway, like I said, things were beginning to make sense and I could feel a positive trajectory forming after a difficult 2017 of limited work opportunities, as well as struggling with motivation for kayaking as consequence of a difficult few months with strength and my psychological demons re getting on the water.
Friday I was hit with an unexpected bomb shell…and as I have always pledged to tell the truth in this blog, and so against my gut instinct, I will share this, as I know some of my readers also live with MS and tell me my blog is useful…and as that is why I set up this blog…here goes…
So Friday morning I went to the relapse clinic as it was felt I may have had / coming to the end of a relapse; I have not been to one before since living in Cardiff as generally if I feel something is up, I push on through as I know things usually resolve on their own.
This time, however, it felt different as my thinking brain felt like it was very far back in my skull and that thinking in itself was an unobtainable task….like my arms weren’t long enough to reach my little parcels of thoughts, high up on the shelves of my thought library in the very back of my skull cupboard. Does that even make sense? As such, I felt spaced out, lacking balance and awareness of space, shaky…almost floating through life somehow disconnected from my body. I have also had quite a bit more neuralgia than usual too.
For some time now I have been experiencing an occasional horrendous situation at night time where I have been fully awake but completely pinned down to my bed unable to move trying to scream for help with no success. Other times, my hand may shake violently from side to side, my leg will shake/kick out hard, I may smell things that no one else can seemingly smell, and last Friday….I found myself driving on the opposite side of the road towards oncoming traffic. That’s right…I don’t know how I got there, I was on a short local journey, and I didn’t realise what I had done until just in time.
With the exception of the car situation…I have IGNORED all of the above as I have just put it down to standard Malcolm irritating behaviour and have just got on with it.
So back to the relapse clinic; in attendance was a Registrar, an Occupational Therapist, a Physiotherapist, and a Nurse. I told them my reason for coming and they then did lots and lots of the usual office tests to see how my nerves are doing etc and yes, as I always knew, my left eye is dodgy and left arm and hand have now incredibly poor strength. So nothing new there.
They then began to talk about my cognition and various experiences, particularly my sleep issue. They said they needed to speak to the consultant and do some more research but they intend to call me on the telephone in the afternoon. Thinking nothing of it and just putting that down as really marvellous service, I left the hospital to go do a home visit for one of my own patients.
I hadn’t been home long in the afternoon when the Registrar called me on the telephone. She said that she and the Consultant believe that Malcolm (for those of you who are new to my blog, Malcolm is what I call my Multiple Sclerosis) is causing me to have some form of seizure…in the form of absences and various twitchy wicky wacky woo things. That was the first bomb dropped….I was NOT expecting that. Secondly, as consequence, until further notice, I am no longer permitted to drive.
Well isn’t that just dandy-pants.
Imagine my horror. I was devastated and I must confess I rang my Mum and I was a complete mess.
All I could think of is how I am self employed and that I rely on my vehicle, especially for home visits and my present forest school related activities in the Valleys. Most of you will think “why don’t you become employed?” The simple answer is I get bored easily and thrive when I have a range of projects and so unless it is something that I feel overwhelmingly passionate about, since Malcolm, I refuse to commit to just one thing unless absolutely necessary as I don’t flourish being pigeon holed into one box.
So, was this the end of my ability to earn money? How were we going to live? HOW FRUSTRATING. I have been through a couple of phases after the initial shock…where 1) Troubleshooting 2)Denial 3)Upset 4)Troubleshooting 5) Back to upset…
I’ve been up all night thinking about all of this. It’s now 01:46.
This week during the training I was delivering with Surfability, we asked our students to think about something that they feel is impossible and then to swap papers with their team members who will then find solutions to those impossible tasks.
No matter the problem – from walking on the sun to getting a fish to ride a bicycle, there were solutions to everything.
I have seen that with Surfability’s incredible work too – never did I ever have concept that someone with Paraplegia or is blind, for example, could surf as a professional until I met Ben.
I have begun to take stock and realise that there will be solutions to me getting around and sourcing work locally to me (maybe even further afield!); maybe this blip is a way of the universe telling me to slow the heck down and remain focused on being true and kind to myself.
I will simply have to be creative with Forest School locations, perhaps adapt my private practice to be in a clinical room only rather than home visits; make sure that my education work is only accessible by public transport and/or get lift where possible. Maybe I need to nurture my relationship with the likes of Disability Sport Wales more as their work is quite genuinely something that truly inspires and motivates me…just like my work with Ben. After all, isn’t that what I have been trying to help do by the very essence of this blog and my initial Journey to Freedom (which is never ending!)….help to inspire that sense of adventure in all no matter their hurdles? Well perhaps this is, and I am thinking out loud, me travelling the bumpy road of my own life adventure to remind me that I hope to nurture the best in others to embark on their own adventures and reach their full potential…but first, I must begin to look after myself more so that I can practice what I preach.
I intend to go the swimming pool and start getting strong again, I intend to take a breather in the jacuzzi afterwards and allow myself that small luxury…and I will take a paddle on my SUP – not to go on a mission in the first instance (that will come later), but to simply relish in the pleasure of being outdoors and listening to the plinkety-plonk of the water on my paddle. And we WILL got to Asia and New Zealand next year if we have the funds as life really is for living.
I will get there in the end to wherever the “end” may be and I will try to live more in the moment and to always expect the unexpected in this life as it is very clear that only one thing is certain, and that is change and that no-one, not even me…no matter how hard I try to kick and shout and protest otherwise….no one, is invincible, we are all only human.
It’s now 02:13….I’m going to try to snuggle down now. Good night.