Rethinking Impossible.

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.

 

 

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Cleaning our Waterways 1 Paddle at a Time. 

Hate litter creeping into even the most remote and wild of places reminding you of how intrusive human life is on Planet Earth?

Sick of sitting on the beach and seeing bottle tops, cotton buds, and nondescript bits of plastic scattered amongst the strand line?

Have you noticed all those swamp monster like bits of trash lurking in our what should be our beautiful and relaxing waterways?

Want to help raise awareness and spread the message of trying to significantly reduce our waste, recycle and clean up our act?

Well look no further – I have been part of the #PaddlePickup team. We are paddling from Bristol to London along the canal and river system picking up unsightly and dangerous rubbish which will undoubtedly end up in the sea whilst probably  harming our inland waterway animal life along the way.

If you want to learn more about the project, which aims to educate and inspire people of all ages to rethink their use of plastic and its disposal, check out 

http://www.paddlepickup.com 

Acceptance & The Ultimate Challenge

I always said that this would be a blog that would be completely open and honest; and that is exactly what I am about to be.

You may have noticed I have been a bit off radar in the paddling sense this year, and the reason for that is I have suddenly started to have to deal with a few beasties and psychologically that has been exceptionally hard. I’m not one to talk about my REAL feelings openly as I feel I always must keep up a somewhat extrovert and cheerful persona, even when I feel like I might like to find a cave, wrap myself up and not plan on exiting for a loooooooong time. I think this is because I am an inherently cheerful person, you know, the type you hate for their constant “Tigger” (as my friend Sue used to call me) tendencies. I have learnt over time, that when I even for a minute show my true emotion e.g. sadness or frustration…people find that very hard to understand and just say I’m being “moody” and are dismissive…what a catch 22 situation…and so rather than showing how I feel, I just try to keep going through sunshine and comedy.

On the one hand, this “push on through” mentality has been wonderful in a” fight or flight” sense where it has enabled me to break the boundaries of my physical and mental self to achieve incredible things, like; kayaking across Scotland, circumnavigating Menorca by kayak, and of course, let’s not forget the 3 Lake Challenge and attempting to circumnavigate Malta by SUP (yes I know, nobody likes a show off!). But what it hasn’t done, has enabled me to be truly mindful and in touch with my feelings when it comes to MS. That’s right…not “Malcolm” as I affectionately call it as a comical coping mechanism…I have Multiple Sclerosis.

I believe that I have been, until now, in complete and utter denial that I have it. I have been so hell bent on ensuring that I break free from the shackles of it and stay SO positive, that when things have happened that I haven’t been able to push on through, it has taken the rug out from under my feet and landed me head first back to earth with an overwhelmingly painful thud. A thud that has been incredibly hard to swallow.

Since our wonderful attempted circumnavigation of Malta last year, I have done very little paddling because something new and downright frustrating started to happen to my body over winter.

Straight after Malta, I ended up with a seemingly somewhat chronic tummy bug…it felt like it went on forever. My immune system didn’t feel at all strong and I started to get a lot more lightning bolts throughout my body causing me immense discomfort and pain. Whenever I attempted paddling in the winter, no matter how wrapped up I may be, the cold impacted me so badly, that I would find it very hard to walk back up the stairs to the apartment without a little push on my bottom to help me up by a trusting hand, and then on reaching the flat, I would be taken over by a blanket of lethargy; I apparently fell asleep mid-sentence once. All from a couple of hours paddling; this is UNHEARD of for me.

Gradually I began to dread going paddling and so started to avoid the thing that I held so dear and owed by physical strength and mental well-being to. Earlier this year, I also started to have issues with word finding again and my memory has been interesting…but the one thing which really got to me, was learning that my eyesight on my left side is deteriorating permanently…at that moment, especially when I read the letter in black and white, it made me sit up and pay attention. It hit me like a rhino running into my jaw that this thing isn’t going away.

Back to paddling…

So I found myself in a situation where in the main, in the colder weather, if I went out paddling I would end up in pain, stiff, and extreme lethargy. This then put me off going paddling as I hated the way it made me feel afterwards, even though I loved being on the water in the moment. I began to lose my confidence and if my partner said “hey, let’s go paddling”…I found myself thinking of every excuse not to go like it was the WORST possible idea she has ever had….you know, like she was ultimately saying “Sonja, I’ve run you a bath, and just so you know, it’s an ice cold bath full of leeches…your favourite!”

I managed to commit to do my SUP instructor training…which was in some rather chilly weather. Again, this made me feel like rubbish after the sessions, despite passing it all…but as I am still in this awkward mentality right now due to a total lack of confidence from winter/spring time…I have been struggling to say to Ben (from Water Skills Academy), YES, absolutely, I am ready and willing for you to watch me instruct a group for assessment…again…completely unlike me.

So after all of this, my left side has become very weak again and I have put on 2 stone in weight; this is not cool at all.

This week I had a little unexpected accident at the Coldplay concert where right at the end a shard of burning hot firework ash fell straight into my eye. We managed to get to first aid very quickly where we flushed it out with saline and yesterday I had my eye fully inspected and some antibiotics given me. I am so attractive right now it’s just madness.

I also met up with someone this week who I knew years ago, who is facing a very tough health time; he said something that resonated with me “not enough people are living for the now, they are all so focused on the future, we need to live for the now”.

So yesterday in between snoozing from the inevitable lethargy and pain a burnt eyeball has given me, I decided that ENOUGH IS ENOUGH of all this self-pitying nonsense and that I need to focus on the now but with a little thought for the future. If I want to be strong and healthy again, making the most of my life on Planet Earth, for me and for my future family, I need to focus, with a HEALTHY dose of “pushing on through” whilst being mindful.

I accept now, finally, that I have Multiple Sclerosis, but I will not let it take over my body and my soul anymore. I will lift this physical weakness and this veil of sadness but to do this, I need a focus, a goal, a challenge.

Next summer, with a small team, we aim to SUP the length of Sognefjord, Norway’s longest and deepest fjord. Stay tuned for paddling updates as soon as I get my mojo back from my eye incident!

sup

 

 

Human carelessness hits home – seagull entangled.

Today I’m not going to share with you my “beautiful” and “totally awesome,man” kayaking experience in Menorca…as I find myself, right now, feeling somewhat full of grief.  

We were coming to the end of our lunch break on dry land, and as we looked out to the bay, out of nowhere, like Hitchock’s movie “Birds”, the sky was swarming with seagulls, screaming at the top of their lungs. 

We noticed, after some confusion, that in the water was a seagull flapping around in the most bizarre of manners; it almost looked like a cormorant trying to dry its wings half submerged, but equally, it looked like an eagle feasting on something.  

A few minutes passed and we began to feel that this bird was not trying to, for instance,  mate another seagull in a curious aquatic display, nor was it dining on something – it was in trouble.  

I got into my boat and paddled over gently to the creature – I circled it a couple of times to try to make sense of what was going on. 

It was drowning. 

It was difficult to see why but cautious for my own safety I took a short period to analyse the situation. 

It appeared to have its beak stuck in its foot below the surface with fishing line. He would manage to get his face to the surface to take in a breath and then he would immediately be pulled under by his foot. 

I couldn’t bear it – I needed to try to cut him free. 

I gently slid my paddle under him. I thought he would be terrified and try to fight me but he didn’t. Although he was clearly exhausted for fighting for his life, he seemed to know I was trying to help him and so he flopped on to my paddle. 

I got him onto the surface of my boat but he jiggled slightly and fell back into the water. I was mortified. 

I scooped him up for a second time onto my paddle – he still let me do this and this time…I managed to keep him on my deck. 

The only problem here was that if I slid my paddle from under him, he would fall into the sea again. Fortunately, I was not far from shore at this point and the water was shallow and so Emily gently waded in and pulled us to shore. 

He had a fishing hook straight through his beak. It was attached to loads of fine fishing line wrapped around both his legs, locking them together.  He also had so much around his left leg that his foot had turned blue. 

Emily calmy held his wings whilst I got out the boat and took my kayaking rescue knife from my buoyancy aid. 

He let us work – he didn’t fight us. It felt like he looked us in the eye and said he understood we were trying to help.  

I cut the line that connected the hook in his beak to his foot so he could raise his head, and then I managed to cut the lengths of line that were wrapping his legs together so that he could stand. 

I tried to take more from his legs but he began to become distressed and so we let go. 

He was able to stand at this point but the hook still remained through his beak and wire around his feet. We had no means to get the hook out and if we did, we may have caused him even further damage. 

We hear so much about marine plastic being a massive issue and of course it is, so please be mindful about your shopping and disposal habits.  However, let’s not forget about the impact we have on marine  life through things such as fishing – in fact, any activity that if not practiced mndfully can entangle innocent creatures and lead them to an absolutely barbaric end. 

I’m unsure right now whether I should have left the bird to drown, as although his death would have been distressing… I think it may have been quicker than the inevitable lethargy, hunger, and pain that he is likely to experience due to not being able to eat due to the hook and the infection he will get from the wire around his legs…he may also get his beak caught again. 

Right now I am horrifed and this incident has been a stark reminder as to WHY I did my postgrad in wildlife conservation. 

It’s very easy to see images online through the likes of Facebook and be saturated with so much information that when you see something like a marine creature ingest something WE, HUMANS, have made, to become desensitised to it. 

I know that Emily and I won’t ever forget this. 

Meet Sid – may he gently fall asleep. 

On a slight deviation – I have just come across this petition to stop UK supermarkets selling fruit and veg in plastic packaging… will you sign it? 

Swamp monster meets Menorca 

Exactly a year ago, I embarked on a very exciting unknown adventure with a team of swash buckling companions. 

We circumnavigated Menorca by kayak unsupported. 
It was a truly unforgettable experience for many reasons (see earlier blogs and navigate to my “films” tab to kick back and watch some of the action)…however, I couldn’t get out of my head how beautiful the place is from the water. It was especially magical to unplug in such an unspoilt and tranquil place. 

I decided a mini adventure beckoned and so off we flew this week, back to the turquoise waters of Menorca. 

It has been touch and go this week as on my SUP instructor training last weekend, I ingested too much river water – most likely when doing rescues –  and ended up getting a rather unexpected and gruesome bout of D&V… I genuinely believe a river MONSTER is growing inside my belly… I am presently 6 months pregnant with all the associated belching and tummy rubbing… I can’t go through this for nothing,  there best be a bloody alien emerging from within after all of this. 

We weren’t sure if I was going to be able to make it out here, but in the end, we thought ‘sod it’ – let’s blooming go! 

We arrived yesterday and had a very relaxing time meandering the Italian-like lanes of Mahon and boat window shopping in the harbour. So far so good…no D&V rearing its ugly head… 

This morning I awoke to a peculiar feeling from within, but despite this, we went for some breakfast. On returning to the room to get into paddle kit, I began to sweat and feel like fresh hell… I suddenly felt a rumbling from within and with horrified alarm I shouted “I’ve shat myself!”. I ran straight into the bathroom to a concerned yet calm Emily…. I immediately sat on the loo to evacuate the river monster…only to look up to realise that Emily was in fact, herself, mid flow, doing a number 2 but managed to stop the flow so she could save me from going in the bath tub. Now…. if that’s not love, I don’t know what is. 

Anyway, after this hideousness, we lushed on through and headed back down to Es Grau to see our friends at Menorca en Kayak whom we sold our expeditions boats to last year. 

They very kindly agreed to lend us some boats to go for a jaunt. The plan originally was to get boats and disappear on a camping adventure for a few days but we decided, due to my state and general tiredness from travelling,  we would have a gentle training day and go off for some wild camping tomorrow. 

We had a beautiful time pootling around Es Grau bay, Emily visited her first cave and stuck her boaty beak in around Fondeadero de los Llanes…and then we headed over to a nearby island, Illa d’en Colom to find our own private beach…so we thought…

That was until, after I had just convinced Em that of COURSE it’s okay to swim and sunbathe topless as noone is around…”it’s not like they can wall here”…. a group of 17 Americans blasting loud music from their kayaks & paddle-boards rocked up, inclusive of selfie sticks. Never have I ever seen an Em move so quick to cover herself up. 

We were gutted that our quiet haven was intruded upon, and so after a quick lizard spot, we paddled over to Ses Mames Fondes and then back to Es Grau to relax for a wee while before heading back to Mahon for the night.

It’s nice to be back in my boat!

We’ve got a loose plan for the next few days where due to the wind direction, we will be heading anti clockwise from Es Grau, most likely to go up to Fornells and back. Cannot wait. 

Aqueduct Magic 

The other weekend saw one of my most magical paddling days, but in a very familiar location  – The Llangollen Canal. 

I was due to have a Board meeting with Canoe Wales on the Tuesday up in Bala and so we (my paddle companion, Emily, and I) decided we might as well have a wee holiday in North Wales. 

Up until last January, I used to live close to the canal – walking along it on a crisp sunny day was always one of my favourite things to do, and I have fond memories of paddling across the aqueduct with my dear friend Erin, bathed in sunshine and dazzled by the autumnal colours within the valley surrounding us. 
No matter the time of year, or weather conditions, the Llangollen Canal and its aqueducts are always a magical place to be.  

As I was working up north after our weekend, I didn’t want to take my lovely Venture Jura boats and keep them vulnerable to thieves on my roof rack. 

Richard Witheridge of TNR Coaching and one of our chief rescuers on our Maltese SUP trip very kindly lent us two Pyranha Fusions for a day messing about in boats. 

It was a beautiful sunny and warm spring day, March 25th…the best day of the year so far in my opinion.  
We set off from Richard’s pub and outdoors centre, The Boathouse at Chirk Marina, and pootled along the canal full of cheer, gulping in the fresh air, and fawning over lambs in the field.  

We giggled away when winding up and down a little foot bridge, ate icecreams from a delightful sweetie shop barge, and glided our way across the Llangollen Aqueduct and beyond. We lay in the sun surrounded by lambs, played fetch with our ball that bounces on water (and erm…I got it stuck in the hedgerow and had to tackle prickly shrubbery whilst balancing in my boat), ventured the deep dark tunnel, and diced with death when faced with some rather inexperienced and nervous day canal boat captains. 

All of this wonderment, topped off with a glowing red nose and an EXCEPTIONAL pie in Richard’s pub. 
Absolute bliss. 

If you would like to try paddling and want to do so in a safe and very scenic environment, get in touch with Richard through his site, where he will be sure to help you. 

Pedals not Paddles – Cold Hard Times

Since Malta, I’ve been having a battle with Malcolm.

You see, this winter, it has been really clear that even if I’m wrapped up warm, when out on the water or even simply being outside having a gentle walk, I will be absolutely badgered for the rest of the day.

I have always known temperature to have a bit of an impact on me, and indeed others with MS, but not to this degree. In fact, if you would like to learn more about temperature and MS, check out this article

In the cold, my left side has become increasingly stiff and weak, sometimes painful, and I am awash with severe lethargy.

A few weeks ago, after an hour or so of kayaking, I got home where within minutes I apparently fell asleep mid-sentence. To me, the cold is now like a sleeping pill and a tight jacket of the limbs all rolled into one.

This has impacted my desire to get paddling during these cooler months, as a few hours on the water means an afternoon and evening written off feeling drugged up, weak and floppy.

I have also noticed if I go swimming and the pool is a little chilly, despite physically swimming to keep warm, I will, without question, become very stiff and tired after that too.

I won’t lie – this has made me demotivated generally with exercise, which is THE number one thing I recommend for staying fit and healthy with MS. As such, I have put on over a stone and I can feel that my left side is noticeably weaker than my right again.

You may say…”get down the gym Jones, stay inside where it’s nice and warm”…yes, I hear you, loud and clear, but I find it so bloody boring! I need to be outside, not just for the physical benefits, but because it is the best medicine for mental health too.

This weekend, my left arm and hand felt so weak, that I flatly refused to go paddling, which really is unheard of. I just didn’t want to go anywhere near that cold water; I didn’t feel strong enough on my left side to sustain paddling for any length of time, and was frightened of feeling wiped out again. I was also, in truth, fearful for my safety on the water if something were to go wrong.

I was desperate to do something physical and outdoors,  and so after a lovely relaxing breakfast at Lew’s (my new favourite breakie place), I was taken out on a bicycle, for the first time in about 8 years, in my thermals, to go for a jaunt along the beautiful Taff Trail.

HOORAY!!!!! Despite some hilarity on the way back cycling with no resistance due to a gear mishap, and an aching rear end, this was something I could do where I didn’t need any particular strength from my left arm, and if my legs felt stiff or achy, I could always let the bike free-wheel without me pedalling for a rest.
I got to see some beautiful flowers, as well as the view of the river from another angle for mental clarity. Being by water always makes life super dooper…not that I’m not a cheery human, it’s just my soul food.

The other thing which was really noticeable, were my energy levels. Unlike paddling in the cooler weather, pedalling in these conditions did not wipe me out. I think that’s because with paddling, my lower body is relatively inactive, plus I am essentially immersed in cold water with only the boat for a barrier. With cycling, my legs are moving like billy ‘o, my heart is pounding, and I’m even getting rather sweaty due to the heat I’m producing.

I am so over the moon about it, that I aim to later this year, and I am just going to throw out into the ether a date off the top of my head – the end of September – to cycle the full length of the Taff Trail; Cardiff to Brecon which is 55 miles (88km).

main_trail_image

This will be a great focus for overall fitness and to build strength back into my legs…and once the weather is warmer, I will ensure I get back out on the water.

This has all affected me more than I thought it would mentally, and so I have allowed myself a period of self-pity, but now, I really need to buck up my ideas, especially as I promised a dear friend of mine whom has recently passed, that I will never give up, and will always for as long as I can, go on paddling adventures. And that, dear Reader, is what I hope to be able to do. Malcolm, can quite frankly, hop off.

Stay tuned for pedalling and paddling updates!